Report 2010 by Piricanta

Ankylosing Spondylitis Patient Organisations Worldwide An overview collected in January 2010 by the

www.spondylitis-international.org Contents: page ASIF member societies in Australia/Queensland .................................................................................. 2 Australia/Victoria ........................................................................................ 3 Austria ........................................................................................................ 4 Belgium/Flanders ....................................................................................... 5 Belgium/Wallonia ....................................................................................... 6 Brazil .......................................................................................................... 7 Bulgaria ...................................................................................................... 9 Canada ...................................................................................................... 10 Croatia ............................................................................ no reply since 2008 Czechia ..................................................................................................... 12 Denmark .................................................................................................. 13 France ......................................................................... report not yet received Germany .................................................................................................. 15 Great Britain ............................................................................................ 17 Hungary/Budapest .................................................................................... 18 Iran ........................................................................................................... 19 Ireland ..................................................................................................... 20 Italy .......................................................................................................... 21 Japan ......................................................................... report not yet received Moldavia................................................................................................... 23 Netherlands ............................................................................................... 24 Norway ........................................................................... no reply since 2008 Portugal .................................................................................................... 26 Singapore ................................................................... report not yet received Slovenia .................................................................................................... 28 Spain ........................................................................................................ 29 Sweden ..................................................................................................... 31 Switzerland ............................................................................................... 32 Taiwan ..................................................................................................... 33 Turkey ...................................................................................................... 34 USA........................................................................... report not yet received Other Ankylosing Spondylitis patient societies in Ukraine .......................................................................... no reply since 2004 Summarized news from AS societies and from AS literature ............................. 32 Updated overhead viewgraph.......................................................................... 33

Ankylosing spondylitis patient societies world-wide January 2010 Please send corrections Reto Baliarda, ASIF webmaster, Leutschenbachstrasse 45, CH-8050 Zurich, Switzerland, reto.baliarda@bechterew.ch

ASIF member society in the Australian state of Queensland:

Ankylosing Spondylitis Group of Queensland PO Box 193, Taigum, Queensland 4018,  (+61) 7 3263 5216 eMail address: Q L D @ A S A U S T R A L I A . O R G Internet homepage: H T T P : / / W W W . A S A U S T R A L I A . O R G

(Foundation in 1996 initiated by John EBERT) Membership 91 paying members including 90 with AS, 2 life members 1. Jan. 2009 Local branches

1 local group with weekly hydrotherapy in Brisbane

Board

7 patients with AS

Office staff

volunteers only

Important persons running the society International contacts and Delegate to ASIF Council Medical advisors Newsletter Editor

President: Ross WILSON Secretary: Maritza PRADA SULLAVAN Treasurer: Lynn ADAMSON Ross WILSON

Dr. Matthew BROWN (rheumatologist), Margaret LEWINGTON (physiotherapist) «AStretch» (4 per year) Distributed to Queensland, New South Wales, Victoria, Western Australia and Tasmania. A combined effort of the Australian groups in Queensland and Victoria. Editorial Board: Danielle PULLIN, Annie MCPHERSON, Dr. Lionel SCHACHNA, Margaret LEWINGTON

Articles published in 2008 and recommended for translation Further publications

New members receive free copy of our land exercise DVD which was filmed and launched in 2006. Copies available for sale. Our water exercise DVD filmed in 2007 was launched and distributed in 2008. Copies available for sale.

Most important events in past and coming year

2009: Awards dinner for life members, various other dinners. Activities such as bike ride, walk and picnic.

Financial sources Membership fees

100% membership fees + donations

Mostly discussed problems and intentions Remarks

Management of AS

2010: Dinners. Activities such as bike ride, walk, picnic and bowling.

$20 per annum $15 per annum eMail subscription and concession

The Queensland group is offering newsletter subscriptions both via eMail and ordinary mail as a service also to members of the former AS Group in New South Wales.

Ankylosing spondylitis patients society in the Australian state of Victoria:

Ankylosing Spondylitis Group of Victoria Ankylosing spondylitis patient societies world-wide January 2010 Please send corrections Reto Baliarda, ASIF webmaster, Leutschenbachstrasse 45, CH-8050 Zurich, Switzerland, reto.baliarda@bechterew.ch

P.O.Box 3166, Burnley North, VIC 3121 Contacts: Belinda Martin, email :B e l i n d a . M a r t i n @ a u s t i n . o r g . a u, (+61 3) 9496 4045 Membership 1. Jan. 200910 Local branches

February 2010 : 68 including 63 ankylosing spondylitis patients

Board

Officers 5 Individuals with AS, Volunteers 4 Individuals with AS, Health Professionals 2

Office staff

None

Important persons running the society

President: Annie MCPHERSON Treasurer: Rosemary STEPHENS Secretary: Belinda MARTIN Editor: Danielle PULLIN Events Coordinator: Vacant Belinda MARTIN, Belinda.MARTIN@austin.org.au

International contacts and Delegate to ASIF Council Medical advisors Newsletter Editor

Further publications Most important events in past and coming year Financial sources Membership fees

Mostly discussed problems and intentions

Based at Austin Hospital, Austin Spondylitis Clinic, Heidelberg

Dr Lionel SCHACHNA (Director, Austin Spondylitis Clinic), Belinda MARTIN RN (Research Coordinator Austin Spondylitis Clinic) «AStretch (4 per year), a combined effort of the Australian groups in Queensland, and Victoria, AS Group of VIC contributes to Arthritis Victoria‟s publications, and educational and information seminars; AS Group of VIC contributes to Caulfield Community Health Service AS educational programs. This is distributed Nationally Editorial Board: Danielle PULLIN, Annie MCPHERSON, Dr Lionel SCHACHNE, Margaret LEWINGTON 2009:2 x social dinners, 1 x social walk, 2 x educational seminar 2010: 2 x social dinners, 1 x social walk, 2 x educational seminar Government grants, membership fees and donations AU$25 per Year AU$20 per Year Concession New members receive the AS QLD Land Exercise DVD launched in 2006 included in membership Available for purchase – AS QLD Water Exercise DVD launched in 2008 Educating individuals with AS about the disease and using it as a forum for exchanging ideas

ASIF member society in Austria:

Österreichische Vereinigung Morbus Bechterew (ÖVMB) Obere Augartenstr. 26-28, A-1020 Wien,  (+43-1) 332 28 10 (Wed. 15.oo-17.oo h), Fax (+43-1) 332 28 10-4 eMail address: O F F I C E @ B E C H T E R E W . A T Internet homepage: H T T P : / / W W W . B E C H T E R E W . A T

Foundation in 1984 initiated by Franz KALTENBRUNNER († 1993) Membership 1357 paying members, including 102 sponsors 1. Jan. 2009 Local branches 50 local branches with weekly exercises. Board 13 board member including 11 AS sufferers Office staff

Helga MACH volunteering, no employees, o f f i c e @ b e c h t e r e w . a t

Important persons running the society

Präsident: Hofrat Ing. Paul POCEK, Hellwagstr. 4-8/2/7, A-1200 Wien,  (+43-1) 332 88 63, eMail: p r a e s i d e n t @ b e c h t e r e w . a t Vizepräsidentin: Edith THURNER, Klammstraße 70 / Top 49, 6020 Innsbruck Kassier (treasurer): Werner BASZLER, Anzengrubergasse 19, A-3003 Gablitz Schriftführerin (secretary): Inge ENZENDORFER, Gründbergstr. 26, A-4400 Steyr Ruth KURZ, Wildgansgasse 3, A-7400 Oberwart,  (+43-3352) 32305, mobil (+43-664) 8754005 bur g en lan d@bech ter ew.at

International contacts and delegate to ASIF Council Medical advisors

Newsletter Editor(ial board)

Articles published in 2008 and recommended for translation Further publications Most important events in past and coming year Financial sources (in %) Membership fees Mostly discussed problems and intentions

Prim. Univ.-Prof. Dr. med. Albrecht FALKENBACH, Sonderkrankenanstalt-Rehabilitationszentrum Bad Ischl der Pensionsversicherungsanstalt, Lindau 78, A-4820 Bad Ischl,  (+43-6132) 24253 700, albrecht.falkenbach@pva.sozvers.at Dr. med. Gudrun LIND-ALBRECHT, Fachärztin für Physikalische Medizin, Düsseldorf Dr. med. Bernhard KÜRTEN, FA für Innere Medizin / Rheumatologie, FA für Physikalische Medizin und allg. Rehabilitation; Kurarzt, Wahlarzt; Stubnergasse 1, 5630 Bad Hofgastein, +43 (0)6432 / 213 21 Also sections and branches have their local medical advisors "morbus bechterew AKTIV" (4/year) Editor: Ruth KURZ, Wildgansgasse 3, A-7400 Oberwart,  (+43-3352) 32305, bur g en lan d@bech ter ew.at Advertisement: Monika HONIS, Steingasse 154, 9020 Klagenfurt, +43 (0)463 / 34 06 83 Gudrun Lind-Albrecht: Günstige Ernährung zur Vorbeugung der Osteoporose bei Morbus Bechterew. mb AKTIV 94 ((September 2007) Gudrun Lind-Albrecht: Die Lagerungstherapie nach Schaarschuch-Haase. mb-AKTIV 89 (June 2006) Info folder printed in 2007 2009: 9th ASIF Council Meeting in Bad Hofgastein 2010: 21st Generalversammlung, 23 - 25th April 57 % membership fees, 3% sponsor donations 40 % advertising and literature sales 26 € per year for patients or sponsoring members 30 € per year for patients including their family Our members are mostly older people. We think young ones don´t want to be in a society for sick people. The most important fact is, the young patients need to get an early diagnosis and an early treatment.

Vlaamse Vereniging voor Bechterew-patiënten v.z.w. (VVB) c/o Leopold BOGAERT, Pinksterbloemhof 16, B-8300 Knokke-Heist,  (+32) 50 51 28 30 eMail address: v v v . l e d e n a d m i n i s t r a t i e @ s c a r l e t . b e Internet homepage: h t t p : / / w w w . s p o n d y l i t i s . b e (Foundation in 1983 initiated by Patrick DE CROIX, Rustoordstraat 35, B-8020 Oostkamp) Membership 1. Jan. 200910 Local branches Board Office staff Important persons running the society International contacts and delegate to ASIF Council Medical advisors Newsletter Editorial board Articles published in 2008 and recommended for translation Further publications

About 700 paying members including about 680 patients with ankylosing spondylitis 13 local branches with weekly exercises There are 11 Federal board members which exists of president, vice-president, secretary, treasurer, 4 prov. co-ordinators, webmaster, 2 members editorial board. Volunteers only: Several volunteers are voluntering in more than 1 job. Voorzitter (chairman): Leopold BOGAERT, Pinksterbloemhof 16, B-8300 Knokke-Heist Ondervoorzitter (vice chairman): Claire VAN MOFFAERT, Kikvorsstraat 1141, B-9000 Gent Sekretaris: Lieve DOSSCHE, Vinkenstraat 41, B-8310 Assebroek,  (+32-50) 37 53 40 Penningmeester (Treasurer): Walter VERMEYLEN, Heverlee, vvb. leden admin istr atie@scar let. be Coby OTTER, Ijsboslaan 28, B-1701 Itterbeek,  (+32-2) 30 60 599, c o b y . o t t e r @ t e l e n e t . b e

Dr. R. CHAPPEL, Dr. S. PORIAU, Dr. J. LENAERTS, Prof. Dr. K. DE VLAN, Prof. Dr. R. WESTHOVENS, Prof. Dr. H. MIELANTS, Coby OTTER “VVB tijdschrift” (4/year) Coby OTTER, Heike VAN ACKER Lieve DOSSCHE, Vinkenstrasse 41, B-8310 Assebroek

Oefenprogramma (Exercise book): "Voor Elk wat Wils" ("suited for all": 3 different versions of each exercise, according to the degree of limitation in the joint or muscle group being exercised) III (renewed) Spondylarthritis in 100 vragen (Spondyloarthritis in 100 questions) by M. Dougados Ziekte van Bechterew, 20 jaar later (Spondyloarthritis 20 years later) Article 1: Spondyloarthropathieën Article 2: Psychologische effecten van reumatische aandoeningen Article 3: Medicamenteuze behandeling van de spondylarthropathieën Article 4: Nieuwe mogelijkheden voor patiënten met spondylathropathieën Article 5: Bestaande therapeutische modaliteiten en nieuwe aanwinsten bij de behandeling van spondylarthropathieën Article 6: Het Reuma Alfabet Reuma na de diagnose – Leven met de Ziekte van Bechterew (Rheumatism after the diagnosis – living with AS) by VVB treasurer Walter Vermeylen Booklet «Spondylitis en Sexualiteit»

Most important events in past and coming year Financial 51 % from membership fees, 20% donations, 3% sales, 26% government support sources Membership 16 € yearly for patients and family members fees 21 € yearly minimum for sponsoring members, physicians, therapists etc.

ASIF member society in Wallonia (French speaking Belgium):

Association Polyarthrite, Section « Spondylarthrite ankylosante » Av. Hippocrate, 10 – B-1200 Bruxelles – ℡ (+32-2) 764 35 08 – Fax (+32-69) 35 25 27 eMail address: a s s o c i a t i o n . p o l y a r t h r i t e @ s k y n e t . b e Internet homepage: www.arthrites.be

(Foundation in 1992 initiated by patients; with section « Spondylarthrite ankylosante » since 2004) Membership 1061 members, including 104 ankylosing spondylitis sufferers 1. Jan. 200910 Local branches No weekly disease-specific exercises, however 1 local relays: Board

Office staff Important persons running the society

M. DESSY François : f.dessy@clair.be There are 11 Federal board members which exists of president, vice-president, secretary, treasurer, 4 prov. co-ordinators, webmaster, 2 members editorial board. none Présidente da la section: François Dessy (f.dessy@clair.be )

Vice président: Sylviane D UTHOIT (duthoit@skynet.be )

International contacts and delegate to ASIF Council Medical advisors

Academic medical committee

Newsletter Editorial board

«Trimestriel Polyarthrite» (4 per year) Further publications Information brochure on technical supports New brochure for Spondylarthrite ankylosante Exercises brochure for Spondylarthrite ankylosante

Most important events in past and coming year

6 mars 2010 : journée des Affections Inflammatoires Rhumatismales au CEME à Charleroi

Financial sources Membership fees

15 € per year for patient and family

ASIF member society in Brazil:

Associação Brasileira de Portadores de Espondilite Anquilosante (ABRESPAN) Rua Joaquim Antunes, 490 – conj. 71 – São Paulo/SP Phone/Fax: (+55-11) 3081-5999 eMail address: E M E I@T E R R A . C O M . B R Internet homepage: W W W . A B R E S P A N .

COM. BR

(Foundation in 2004 initiated by Dr. Eduardo de Souza MEIRELLES) In February 2010: 130 members, most of them ankylosing spondylitis sufferers Membership 1. Jan. 200910 Local branches

1 local branch with weekly exercises

Important persons running the society

Presidente: Dr. Tirso DE SALLES MEIRELLES, São Paulo – AS patient Vice president: Adriano MACEDO FÉLIX – AS patient Treasurer: Eduardo DE SOUZA MEIRELLES – rheumatologist President of Treasury Board: Joaquim Jorge GONÇALVES – AS patient Director of Treasury Board: Waldir VIEIRA DA SILVA – AS patient

International contacts and delegate to ASIF Council

Dr. Eduardo DE SOUZA MEIRELLES, São Paulo (address as given above) – rheumatologist

Medical advisors

President of Scientific Board: Dr. Percival D. SAMPAIO BARROS – rheumatologist Scientific Director: Dr. Célio Roberto GONÇALVES – rheumatologist Scientific Director: Yeda Lucia C. BELLIA – physiotherapist

Newsletter Editorial board

being built up

1.Translation of NASS Guidebook for Patients in www.espondilitebr.hpg.com.br and in www.emedix.com.br (permission obtained by Dr. Eduardo DE SOUZA MEIRELLES) 2. Portuguese validation of BASDAI and BASFI indexes – in way of publication – (permission obtained by Dr. Célio Roberto GONÇALVES) 3- Dr. Muhammad Asim KHAN: AS Book – in way of translation – (permission obtained by Dr. Percival D. Sampaio BARROS) 4- AS Diagnosis and Treatment Brazilian Guidelines published in Brazilian Medical Association (www.amb.org.br), Medical Federal Board (www.portalmedico.org.br) and Brazilian Rheumatology Journal (www.reumatologia.com.br) Most important events in past and coming year Monthly Lecture and Meeting with AS Sufferers in GRUPARJ (Rio de Janeiro State Self-Help Arthritic Group) Most important Monthly Lecture and Meeting with AS Sufferers in GRUPARJ (Rio de Janeiro State Self-Help Arthritic Group) events in past Further publications

and coming year Financial sources

Currently only financial donations

Membership fees

Being studied by the Association

Mostly discussed problems and intentions

1. Financial sources for Association maintenance and growing 3. Web page under construction (www.abrespan.com.br) 4. Elections for new directory 5. Lectures and Meetings with AS sufferers in the already established Self-Help Arthritic State Groups 6. Ethics in the relationship with pharmaceutical companies

Remarks

1- Existence of a National Virtual AS Group created by our Vice-President Rodinei SANTANA GUIMARﾃウS before ABRESPAN foundation that has being of great help and support for the Association 2- Low income of most ABRESPAN members leading to initiate the Association only with donations 3- Brazilian Rheumatology Society support and recognition lending their address for legal registration 4- Temporary absence of a physical place for the Association

Bulgarian Ankylosing Spondylitis Patient Society

Българско Сдружение на болните от болестта на Бехтерев Анкилозиращ Спондилит Address of Society: Bulgaria, Sofia 1321, Izgrev, Dianabad 9 – 5 - 20 Date founded, Name of founder: 23-11-2009, Zhivko Yankov INTERNET address (if existing): not available at present (see remarks below) E-mail address (if existing): zhivkoyankov@gmail.com Telephone: 00359 878 957442 Membership 1. Jan. 2010 Local branches Board

Office staff

10 No Zhivko YANKOV – chair Boryana BOTEVA – vice Yasen KOVACHEV – vice Pavel DIMITROV – secretary Tzveti APOSTOLOVA - secretary Pavel DIMITROV - secretary Tzveti APOSTOLOVA – secretary

Important persons running the society Delegate to ASIF Council

Zhivko YANKOV - chair

Medical

N/a at the moment.

advisors Newsletter name Editor

Tzveti APOSTOLOVA

Further publications

Ebook - Guidebook for patients with AS in Bulgarian

Most important events in past and

National Assembly every year

Zhivko YANKOV

coming year Financial sources

Donation, 50E/annum Membership – 5E/month

Membership fees Mostly discussed problems and intentions Remarks

10 March 2010 -Internet address: n/a at the moment (http://morbusbechterewi.wordpress.com – Official Society blog in Bulgarian, we have taken steps to register http://spondylitis.bg which will be online in the next few months and will be available in Bulgarian, English and other languages)

ASIF member society in Canada:

Canadian Spondylitis Association (CSA) 18 Long Cres. Toronto, Ontario, Canada M4E 1N6 Internet homepage: www.spondylitis.ca eMail address: info@spondylitis.ca (Founded by the three former AS societies in Canada in 2006 Membership 290 non-paying members 1. Jan. 200910 �Ontario Spondylitis Association (OSA), Founded in 1985 Provincial 393 University Avenue, Suite 1700, Toronto, Ontario, Canada M5G 1E6 chapters www.spondylitis.ca �Manitoba Ankylosing Spondylitis Association (MASA), founded in 1990 c/o office of The Arthritis Society, 105-386 Broadway, Winnipeg, Manitoba, Canada R3C 3R6 www.spondylitis.ca �Ankylosing Spondylitis Association of British Columbia (ASABC), founded in 1984 c/o Anne Riddick, 15273 24th Avenue # 3, Surrey, B.C., Canada V4A 2H9 www.spondylitis.ca 3 Local branches with regular group exercises and patient forums 8 board members (7 patients with AS Board Office staff Important persons running the society

None President: Michael MALLINSON, 18 Long Crescent, Toronto, Ontario, Canada M4E 1N6, Phone: (416) 694-5494, michael.mallinson@rogers.com Secretary: Anne RIDDICK, 15273 24th Avenue # 3,Surrey, B.C. Canada V4A 2H9 Phone: (604) 531-8307, ariddick@shaw.ca

International contacts Medical advisors

Ken MULHOLLAND (Treasurer of CSA), 14 Orchard Way, New Hamburg, ON Canada N3A 4P7, Phone: (+1) 519-662-913, Fax: (+1) 519-662-4051, kmulhol@rogers.com Dr. Robert INMAN, University Health Network, Toronto, Dr. Walter MAKSYMOWYCH, University of Alberta, Edmonton

Newsletter Editorial board Further publications

«TalkBack» (4/year) - CSA Brochure in English and French

Most important 2009: April 3rd in Montreal Quebec - CSA Annual General Meeting April 4th in Montreal Quebec - Annual National Spondyloarthritis Patient Forum events in past December - launched a brand new website and coming 2010: April 9 in Toronto Ontario - CSA Annual General Meeting year April 9 in Toronto Ontario - Annual National Spondyloarthritis Patient Forum Financial sources

o% Membership fees, 100% donations

Membership fees

Free

Mostly discussed problems and intentions Remarks

• Building national membership base • sponsorship funding

The Canadian Spondylitis Association is pleased to have the following Community Partners: • The Arthritis Society (www.arthritis.ca), • The Spondyloarthritis Research Consortium of Canada (www.sparcc.ca) The Ontario Spondylitis Association has recently been reorganized and membership fees are now voluntary. . The CSA eliminated the member ship fee in April 2009 in order to build a registry of patients willing support advocacy and patient research. Membership donations are encouraged.

ASIF member society in Croatia

Hrvatsko društvo za ankilozantni spondilitis (Croatian Ankylosing Spondylitis Society)

a section of Croatian League against Rheumatism Vinogradska c. 29, HR-1000 Zagreb,  (+385-1) 37 87 248, Fax (+385-1) 37 69 067 eMail address: pr e d s j e d n i k @ r e um a . h r Internet homepage: w w w. r e u m a . h r

(Foundation in 1991 initiated by Professor dr. Ivo JAJIĆ) Membership Report not received since 2008. 1. Jan. 200910

In January 2008: 349 AS sufferers including 151 paying members

Local branches Local branches with weekly exercises in Zagreb, Split, Rijeka, Ĉakovec, Zadar, Osijek, Pula,

Krapinske Toplice, Bjelovar, and Velika Gorica Board

4 AS sufferers and 3 doctors

Office staff

No employees

Important persons running the society

Predsjednik: Dr. Tomislav NEMĈIĆ, Klinika za reumatologiju, fizikalnu medicinu i rehabilitaciju,

International contacts and delegate to ASIF Council

Dr. Tomislav NEMĈIĆ (address as given above)

Medical advisors

Prof.dr.sc. Zrinka JAJIĆ, Klinika za reumatologiju, fizikalnu medicinu i rehabilitaciju, Vinogradska 29, HR-10000 Zagreb

KB “Sestre milosrdnice”, Vinogradska 29, HR-10000 Zagreb,  (+385-1) 37 87 248, Fax (+385-1) 37 69 067

General secretary: Dr. Frane GRUBIŠIĆ (same address as above)

Prof.dr.sc. Božidar ĆURKOVIĆ, Klinika za reumatske bolesti, KBC Zagreb, Kišpatićeva 12, 10000 Zagreb Newsletter Editor(ial board)

Articles for AS sufferers in «REUMA», journal of the Croatian League against Rheumatism (4/year) Doc.dr.sc. Simeon GRAZIO,

Further publications

Ankylosing Spondylitis brochure for sufferers

Most important General assembly every year events in past Meeting of Executive Committee 4 times per year and coming year Financial sources

10% membership fees, 50% donations, 40% advertisements in REUMA journal

Membership fees

Members pay according to their possibilities

Mostly discussed problems and intentions

Foundation of additional branches

ASIF member society in Czechia:

Klub bechtěreviků Karlínské náměstí 12, CZ-186 00 Praha 8,  (+420)-221 890 416 eMail address: k l u b . b e c h t e r e v i k u @ s e z n a m . c z Internet homepage: h t t p : / / w w w . k l u b - b e c h t e r e v i k u . c o m /

(Foundation in 1990 initiated by Jindřich ZICH) Membership 1237 including 1230 AS sufferers 1. Jan. 200910 Local branches 14 local branches, partially with weekly exercises Board

16 AS sufferers

Office staff

no employees

Important persons running the society

Prezident: Jindřich FANTA,  (+420) 321 722 158, jindřich.fanta@volny.cz Viceprezident: Alena LOUDOVÁ,  (+420) 603 504 603, albeacz@volny.cz Jednatel (secretary): vacant

International contacts and delegate to ASIF Council

RNDr. Miloš KONRÁD, Dejvická 36, 160 00 Praha 6,  (+420-2) 24 31 94 87, konrad@ipp.cas.cz

Medical advisor

Prof. MUDr. Karel TRNAVSKÝ DrSc, Arthrocentrum, Prague

Newsletter Editor(ial board)

«Bechtĕrevik» (monthly) Jana IMRYŠKOVÁ, Luděk Imrýšek, SADOVÁ, 1033, CZ-763 12 Vizovice, tel. (+420) 577 453 287

Articles published in 2008 and recommended for translation

Příruĉka pro pacienty (Guidebook for Patients) Exercise video tape (courtesy of Jáchymov spa) Most important 2009: General delegates meeting, Project «Help ourselves» (Ministry of Labour and Social Affairs) events in past 2010: General delegates meeting, election of new board 20th anniversary of the foundation and coming Further publications

year Financial sources

51% membership fees, 29% grants from Ministry of Health, 15% donations, 5% others

Membership fees

300 Kĉ per year

Mostly discussed problems and intentions

Foundation of additional exercise groups

Remarks

World's first AS patient organisation with a monthly disease-specific journal

New scheme and reduction of subsidies from Ministry of Health

ASIF member society in Denmark:

Gigtforeningen for Morbus Bechterew v/ Torben JØRGENSEN, Hjortøgade 1, 4.tv., DK-2100 København Ø,  (+45) 6168 1180 eMail: t o r b e n . j o r g e n s e n @ p c . d k Internet homepage: h t t p : / / w w w . b e c h t e r e w . d k

(Foundation in 1973 initiated by Hans Henrik OLRIK: World's oldest national AS self-help society) Membership 1. Jan. 2009

Approximately 1100 paying members, including 95 % AS sufferers

Local branches

10 local branches with regular exercises.

Board

6 AS sufferers (similar boards exist for all local branches)

Office staff

One part-time employed secretary, Susanne GØTTSKE, s . g o e t t s k e @ e r i k s m i n d e . d k

Important persons running the society

Landsformand (chairman): Jens TRYDE, Havneparken 10a, DK-7100 Vejle  (+45) 61 68 11 80, j e n s b l i c h e r t r y d e @ l i v e . d k

Delegate to ASIF Council

Dr. Jon ERLENDSSON, Grønningen 10, DK-8700 Horsens,  (+45) 75 65 78 98, jon.erlendsson@st ofa net.dk

Medical advisor

Dr. Jon ERLENDSSON (address as given above) Lis Smedegaard ANDERSEN, consultant rheumatologist, King Christian X‟s Hospital for Rheumatic Diseases, Nygade 29, DK-6300 Gråsten,  (+45) 7465 1711, Fax (+45) 7465 0552

Newsletter

«MB-Bladet» (4/year) Niels VOUS, Daruplund 55, 3.Ev., DK-2660 Brøndby Strand, Phone +45 2215 0055 m bbl a det @ bech t er e w. dk Dr. Jon ERLENDSSON;Susanne GØTTSKE, Jens TRYDE, Per SCHWARTZ «Good legs are good for your spine» by journalist Helle JUHL and Jon ERLENDSSON. Morbus Bechterew Bladet Oct. 2008 p. 6–9

Editor Editorial board Articles recommended for translation Further publications

Most important events in past and coming year

«Morbus Bechterew» (a new patient guidebook, December 2009). «Bilkørsel og Bechterew« (Danish edition of "Car Driving with Ankylosing Spondylitis), 2nd edition 2000. Personal MB-identification card provided with a picture in profile 6-min video for general practitioners and physiotherapists produced with the help of K. STENGAARDPEDERSEN, professor of rheumatology, demonstrating signs of early AS in order to reduce the delay between disease onset and diagnosis. It can be seen within our website: w w w . b e c h t e r e w . d k Prof. STENGAARD-PEDERSEN, dr. K. BØCKER and Dr: ERLENDSSON have made a presentation on AS shown within w w w . r y g d o k t o r . d k , a web site for general practitioners and physiotherapists May 2009: Annual meeting in Holstebro May 2010: Annual meeting in Køge

Financial sources

Fees to the local branches. Gigtforeningen, the Danish Rheumatism Association, contributes with a considerable amount of money every year

Membership fees

Fee to the local branch approximately 150 Danish kroner per year (≈ 20 €)

Mostly discussed problems and intentions

Communication: A new homepage has been designed in 2008

ASIF member society in France:

Association Française des Spondylarthritiques (AFS) affiliated with A.F.L.A.R (Association Française de Lutte anti-Rhumatismale) Hôpital Ambroise Paré – Groupement Hospitalier Ouest – Service de Rhumatologie du Professeur Jean-Marie LEPARC 9 avenue Charles de Gaulle – 92100 BOULOGNE-BILLANCOURT eMail: i n f o @ s p o n d y l a r t h r i t e . o r g Internet homepage: w w w . s p o n d y l a r t h r i t e . o r g (Foundation in 2000 initiated by Martine ROCH Membership 1. Jan. 200910 Local branches Board

Report not yet received: Ca. 1720 paying members, including ca. 1500 AS sufferers, all over France and other European and North-African French speaking countries

Office staff Mostly important persons running the society

1 employee Présidente:

Delegate to ASIF Council Medical advisory Committee

7 local branches. Contact persons in several districts 9 AS sufferers Mme Marie-laure BIGOURIE,  (+33) 5 55 26 10 49, eMail marie.laure.afs.limousin@gmail.com Vice Président: M. Serge DUTRIEUX,  (+33) 6 11 82 13 60, eMail: sdutrieu@club-internet.fr Trésorier M. Dominique TREMELOT,  (+33) 2 99 99 50 37, eMail: afs.tresorier@cegetel.net Secrétaire: Mme Marie France LEKEUX,  (+33) 3 20 51 72 89, eMail: marie-france.lekeux@wanadoo.fr M. Serge DUTRIEUX, 81 rue de Balagny – F-93600 AULNAY SOUS BOIS,  (+33) 6 11 82 13 60, sdutrieu@clubinternet.fr Depending on availability of Doctors

Newsletter Editor(ial board)

«Spondylarthrite infos»(3 per year) M. Serge DUTRIEUX (address as given above) and Miss Marie-France LEKEUX, 3/11 rue Emile Romanet, F-59350 SAINT ANDRE LEZ LILLE,  (+33) 3 20 51 72 89, Marie-France.Lekeux@wanadoo.fr Further Integral statement of every medical conference, with agreement of physicians. publications Booklets «What is AS?», «AS treatments», «Daily Life withAS», «Administrative problems with AS» Most important 2009: 2nd Spondylitis Day (Autumn 2009) events in past and coming year Financial 100 % from membership fees, donations, and advertising sources Membership 30 € per annum for patients («active members»), 20 € for family members or friends, 50 € minimum for sponsoring fees members Mostly Local and regional inequalities concerning taking charge of patients, especially concerning access to biologic discussed therapies. problems and Pathologies unrecognised from General Public, Health and administrative Authorities. It is necessary to develop a intentions large partnership between all these publics, according with pharmaceutical industry. Creation of new regional branches. Remarks Medical advisory Committee is independent from AFS AFS is managed only by patients for patients

ASIF member society in Germany:

Deutsche Vereinigung Morbus Bechterew e.V. (DVMB) Metzgergasse 16, D-97421 Schweinfurt,  (+49-9721) 22033, Fax (+49-9721) 22955 eMail: d v m b @ b e c h t e r e w . d e , Internet homepage: h t t p : / / w w w . b e c h t e r e w . d e

(Foundation in 1980 initiated by Herbert HÜMMER, Schweinfurt) 10

15 622 members, including 14 517 patients with AS (15 390 paying members + 232 free from paying due to unemployment)

Local branches

402 local branches with weekly at least one occasion for group exercises and with regular informative or social meetings

Board

8 AS sufferers. Similar boards exist for all of our sections (Landesverbände), taking care of the branches in their federal state (Bundesland) of Germany

Office staff

4 full-time employees (including Geschäftsführer Ludwig HAMMEL) and 3 part-time employees

Important persons running the society

Vorsitzender (chairman): Franz GADENZ, Adelstetten 55, D-83404 Ainring Stellvertretende Vorsitzende: Britta HATTEBUHR, Marienburger Str. 21, D-88213 Ravensburg Schatzmeister (treasurer): Karl-Heinz INGENDAHL, Würzburg Geschäftsführer (general secretary): Ludwig HAMMEL, DVMB office (address see above) Justitiarin (legal advice): Meike SCHOELER, Fritzlar Prof. Dr. Ernst FELDTKELLER (Vice president of ASIF), Michaeliburgstr. 15, D-81671 München,  (+49-89) 49 33 76, Fax (+49-89) 49 00 38 36, eMail: E.Feldtkeller@t-online.de

International contacts Medical advisors

Dr. med. Martin RUDWALEIT, Ev. Krankenhaus Hagen-Haspe, Brusebrinkstr. 20, 58135 Hagen Dr. med. Heinrich BÖHM, Chefarzt der der Klinik für Orthopädie und Wirbelsäulenchirurgie, Bad Berka Dr. med. Bernd FREDERICH, Arzt für innere Medizin und Psychotherapie in Pfungstadt Dr. med. Stephan THURAU, Arbeitsgruppe Immunbiologie, Augenklinik der Universität München

Newsletter

«Morbus-Bechterew-Journa»(4/year) Prof. Dr. Ernst FELDTKELLER, Ludwig HAMMEL, Dr. med. Gudrun LIND-ALBRECHT, Dr. Eckhard PFEIFFER Physikalische Therapie und Rehabilitation bei Spondylitis ankylosans Was spricht dafür? MB-Journal 112 p. 5–9 HLA-B27 und Morbus Bechterew: Warum in machen Ländern häufig, in anderen selten?, MB-Journal 112 p. 20–21 Wann ist eine Operation an der Wirbelsäule sofort notwendig? Morbus-Bechterew-Journal 113 p.10–12 Gewebeuntersuchungen zum Zusammenhang zwischen Knochenentzündung und Knochenneubildung MBJ 114 p. 5–6 Rheumamedikamente vor und nach einer Operation: Was ist zu beachten? Morbus-Bechterew-Journal 114 p. 9–11 Evidenz der Zweckmäßigkeit verschiedener Therapieformen beim Morbus Bechterew, MB-Journal 114 p. 20–21 Vorhersage des Krankheitsverlaufs bei der Spondylitis ankylosans Morbus-Bechterew-Journal 115 p. 7–9 Infektionsrisiko unter Anti-TNF-alpha-Therapie – Was vor und bei der Therapie beachtet werden muss MBJ 115 p. 20– 22 Schriftenreihe (booklet series) der Deutschen Vereinigung Morbus Bechterew: Heft 1: Morbus Bechterew - Ein Leitfaden für Patienten (guidebook for patients) Heft 2: Morbus Bechterew - Die Krankheit und ihre Diagnose (the disease and its diagnosis) Heft 3: Morbus Bechterew - Fremdwörter einer Krankheit (explanation of medical technical terms) Heft 4: CD Bechterew-Recht (legal advice for AS sufferers) Heft 6: Morbus Bechterew - Langzeitprotokoll (for collecting individual medical data) Heft 7: Morbus Bechterew - Physikalische Therapie (physical therapy) Heft 9: Alters- und geschlechtsspezifische Probleme beim Morbus Bechterew (age and gender specific problems) Heft 10: Autofahren mit Morbus Bechterew (car driving with AS) with contribution by Dr.Jon ERLENDSSON, Denmark Heft 11: Medikamente bei Morbus Bechterew (Drug therapy of AS) Heft 12: Morbus Bechterew in 100 Fragen (AS in 100 questions) edited by prof. M. DOUGADOS, Paris Heft 13: Morbus Bechterew – Messwerte für den Krankheitsverlauf, Klassifikations- und Diagnose-Kriterien

Editorial board

Articles published in 2008 and recommended for translation

Further publications

Morbus Bechterew Gymnastikkalender (exercise program for 4 weeks in wall calendar format) Morbus Bechterew Aktivprogramm für jeden Tag (exercise video cassette) Atem- und Bewegungsübungen (audio CD and booklet with AS exercises) Gesunde Ernährung bei Morbus Bechterew (cook book for AS patients) Morbus Bechterew Notfall-Ausweis (emergency card for AS sufferers)

Most important 2009: Again many seminars for AS patients: seminars for newly diagnosed patients etc. Disease-specific courses for lawyers, and for medical assistent personnel events in past Annual delegates‟ meeting June 30 – July 1 in Niederwerrn and coming Training seminars for leaders of local branches and disease-specific training seminars for our local year physiotherapists are again organised by sections in federal states 2009: Annual delegates meeting 27–28 June in Magdeburg, Seminars as in other years. 2010: Annual delegates meeting 26.-27. June 2010 in Köln, Seminars as in other years. Financial 85 % membership fees and donations, 10 % from pension and health insurances, 5 % for advertisements in our sources newsletter Membership fees

36 € yearly minimum for patient or sponsoring members, 30 € yearly minimum for multiple members (more than one member in one family or likewise member in a society for a related disease)

Mostly discussed problems

Federal health administration limiting the therapies paid by social health insurance Foundation of additional DVMB branches Increase the interest of patients to be and remain a member of our association Further improvement of websites of DVMB and their regional sections

Remarks

In 2008, the DVMB research prize was awarded to Dr. Heiner APPEL from Berlin for his contribution to clearing the disease mechanism of ankylosing spondylitis. For the 9th time, DVMB invited tenders for their research prize. Contributors had to submit their scientific results in German language before 1 February 2010.

ASIF member society in Great Britain: The National Ankylosing Spondylitis Society (NASS) Ground Floor Unit 0.2, 1 Victoria Villas, Richmond, Surrey TW9 2GW Tel: (+44-208) 948 9117, fax (+44-208) 940 7736 Email address: nass@nass.co.uk Internet homepage: http://www.nass.co.uk (Foundation on 1976 initiated by Dr Allan St. J. DIXON) 5922 paying members including ca. 97% people with AS Membership 1. Jan. 200910 Local branches 94 local branches with weekly supervised evening physiotherapy held in the physiotherapy department of a hospital, treat 2500 people a week Board 10 people with AS, 6 rheumatologists, 1 physiotherapist, 1 both patient & physiotherapist Office staff Mostly important persons running the society Delegate to ASIF Council Medical advisory Committee

5 full-time employees President: (vacant) Vice President: Dr A. At. J. DIXON Chairman: Mr Hedley HAMILTON (Vice president of ASIF) Director: Ms Jane SKERRETT Jane SKERRETT (address of NASS head office as given above)

Newsletter Editor(ial board)

«AS News» (2/year)

Articles published in 2009

Autumn 2009 included a piece by a patient who had knee replacement surgery 2010 AS News Spring edition will include an update on research into the genetics of AS

Dr. Andrei CALIN Dr. Anthony CLARKE Dr. Andrew KEAT, Northwick Park Hospital, Harrow, London Dr. Richard JACOBY, Exeter Hospital, Exeter Dr. Athimalaipet RAMANAN, South Mead Hospital, Bristol Prof. Paul WORDSWORTH, Nuffield Orthopaedic Centre, Oxford

Jane SKERRETT

Further publications

A Guidebook for Patients (over 130 000 copies donated to date) Bath Indices Car Driving with Ankylosing Spondylitis (by Jon ERLENDSSON) Exercise DVD Factsheets on various topics including Pilates, iritis etc Most important 2009: Annual General Meeting and patient conference in November events in the 2010: Back to Action: how to use the gym safely past and Looking Ahead: best practice in the diagnosis, treatment and management of AS coming year NASS en Masse: fundraising walk to celebrate World AS Day May 9 2010 Financial Voluntary income 87.8% sources Activities for generating funds 9.4% Investment income 2.8% Membership £12 per year (UK), £3 per year (UK unemployed), £15 per year (overseas), £250 lifelong membership fees Mostly New branches, new members discussed Personal advice and counselling to people with the disease on all topics relating to the condition both social and medical problems and Cooperation with other societies in the UK which are also arthritis related. intentions Supporting the Bath research program, the genetic research in Oxford to which NASS members contribute

ASIF member society in Hungary:

MEOSz Bechterew section a section of Mozgáskorlátozottak Egyesületeinek Országos Szövetsége (National Federation of Associations of Disabled Persons) c/o Dr.-Ing. MAJTÉNYI Sándor, Zrinyi utca 109, H-1196 Budapest,  (+36-1) 358 12 74, Fax (+36-1) 280 38 30 b e c h t e r e w k l u b @ f r e e m a i l . h u Foundation as «Budapest Bechterew Club» in 1981 initiated by Dr. PAPP

Irén, Zsolna 17, H-1125 Budapest 10

210 addresses of AS and Rheumatoid Arthritis sufferers registered

Local branches 8 local Rheuma clubs Board

finding the board members necessary for registration as independent society was not yet successful

Office staff

no office, no employees Elnök (chairman): Dr.-Ing. MAJTÉNYI Sándor, Zrinyi utca 109, H-1196 Budapest,  (+36-1) 358 12 74, majtenyi@homas.hu

Important persons running the society

International contacts and delegate to ASIF Council

Titkár (secretary): Dipl.-Ing. SZEREDI Miklós, Muskotály utca 23, H-1118 Budapest,  (+36-1) 319 05 14 Dr.-Ing. MAJTÉNYI Sándor, Zrinyi utca 109, H-1196 Budapest

Medical advisors Newsletter Editor(ial board)

«MB - a Bechterew-Klub Közleményei» (irregularly) Dipl.-Ing. SZEREDI Miklós

Articles published in 2008 and recommended for translation Further publications

Betegségismertetö füzet (Guidebook for AS patients) Tornakazetta (exercise audiocassette) Mozgásprogram (exercise booklet for AS sufferers, 17 pages, copyright: Koltai Endréne gyógytornász) Izomnyújtási és -latítási technika (video cassette 30 min on stretching and muscle relaxation techniques, copyright: Koltai Endréne) Sorstársaimat keresem! (booklet 36 pages "AS sufferer looking for fellow sufferers to join")

Most important 2010: World Day od Ankylosing Spondylitis events in past and coming year Financial sources

5 % membership fees 95 % donations

Membership fee

1200 Forints yearly

Mostly discussed problems and intentions

Financing of health system in Hungary Biological drugs and therapy results

Remarks

The Bechterew Club is not yet a registered charity, only a section of the Association of Disabled Persons.

Iran Ankylosing Spondylitis Society Teheran, No. 25 South Villa St. Tel. (+98-21) 88920989 or 88920990 Fax (+98-21) 88920989 eMail address: af_iass@yahoo.com Internet homepage: www.iran-as.org (Founded in 1993 by Farzaneh Fattahi, Mahmud Gafurian, Ahmad Pur Akbari†, Ahmad Eskandarian, Khosro Asvadian, the rheumatologist Dr. Mahmud Akbarian, Javad Tabatabi) Membership 2730 AS patients with ankylosing spondylitis 1. Jan. 200910 Local several groups in Teheran with common physiotherapy and regular meetings, always with a rheumatologist being branches present Chairwoman

Mrs. Farzaneh FATTAHI (address see above, eMail: a f _ i a s s @ y a h o o . c o m )

Board

Chairwoman + 1 rheumatologist (Dr. S. M. HAKIM) + 7 AS patients among them Mr. H. AHMADI , Mr. H. SAFAR _ KHANI, Mr. S.H. AZHIRY)

Office staff

only volunteers

International contacts and delegate to ASIF Council Medical advisors Newsletter

Farzaneh FATTAHI (address see above, eMail: a f _ i a s s @ y a h o o . c o m )

Further publications

Guidebook for patients (translated from NASS), "Living with AS" (translated from NASS), Physiotherapy booklet, Physiotherapy video CD, «Car driving with AS» by Dr. Jon Erlendsson, Denmark (translated from ASIF booklet) Several brochures for information New brochures AS introduction CD by Dr. A.R. Jamshidi Monthly membership meetings

Most important events in past and coming year Financial sources Membership fees Mostly discussed problems and intentions Remarks

Dr. M. M. EMAM, Dr. S. M. HAKIM, Dr. S. SAMANGUI, Dr. A.R. JAMSHIDI none

membership fees and donations 50„000 Rials per year Financial resources Price of TNF-alpha inhibitors We intend to install some billboards presenting the association in all parts of Teheran, to present video clips on our associations to be shown in the TV, and to offer free blood testing and heart echokardiography for our members and AS patients

ASIF member society in Ireland:

Ankylosing Spondylitis Association of Ireland (ASAI) Carmichael House, North Brunswick Street, Dublin 7, ℡ (+353-1) 83 76 614 eMail: i n f o @ a n k y l o s i n g - s p o n d y l i t i s . i e Internet homepage: w w w . a n k y l o s i n g - s p o n d y l i t i s . i e Membership 1. Jan. 2010 Local branches Board Office staff important persons running the society International contacts and delegate to ASIF Council

120 members, mainly AS sufferers Physiotherapy classes and group swim with weekly exercises in Dublin Physiotherapy class weekly in County Clare Committee selected from membership None Chairman: Mr. Hugh CASSIDY, 36A Abbeyfield, Killester, Dublin 5, ℡(+353-1) 831 66 78 Secretary: Mr. Seoirse SMITH (president of ASIF), Carmichael House, North Brunswick Street, Dublin 7, ℡(+353-1) 83 76 614, eMail: i n f o @ a n k y l o s i n g - s p o n d y l i t i s . i e

Seoirse SMITH, Carmichael House, North Brunswick Street, Dublin 7, ℡(+353-1) 83 76 614, eMail: i n f o @ a n k y l o s i n g - s p o n d y l i t i s . i e Dr. Conor MCCARTHY, MD, FRCPI, Consultant Rheumatologist

Medical advisors Newsletter Editor

Ms. Lisa MCGIRR MISCP (Chartered Physiotherapist) «ASAI Newsletter» (2 per year) sent to all members Seoirse SMITH

Articles published in 2009 and recommended for translation Further Publications Most important events in past and coming year Financial sources (in %) Membership fees Mostly discussed problems and intentions Remarks

Information leaflet for patients published by Arthritis Ireland «Touchpoints» a patient‟s guide to living with ankylosing spondylitis A Clinician‟s Guide to Ankylosing Spondylitis

2009: A follow-up awareness campaign Launch of a second Physiotherapy class in the western region of the country 2010: Membership fees and donations. Pharmaceutical sponsorship for specific projects € 14.00 per annum Foundation of additional branches and health care in rural areas Education of everybody involved in managing the condition, both patients and health professionals

ASIF member society in Italy:

Associazione Italiana Spondiloartriti – onlus (A.I.Sp.A) (o.n.l.u.s. = Organizzazione non lucrativa di utilita sociale) Sede Legale-Via Sirani 3/2 I 40129 Bologna Sede Operativa; Viale Cavina 4-I 40139 Bologna Cell. 3346473571 - Fax 051460423 email address: segreteria@aispaitalia.it Internet homepage: www.aispaitalia.it (Foundation in 1987 initiated by Servizio di Reumatologia dell'Ospedale S. Orsola, Bologna) In January 2009: 550 members including 540 with ankylosing spondylitis Membership 1. Jan. 200910 Local branches 2 local branches with weekly exercises in Bologna Direction committee

6 AS patients and 1 physician

Office staff

2 part-time volunteers

Important persons running the society

Presidente: Dr. Giuseppe ORANGES, Via Antonio Bondi 6, I-40138 Bologna, e-mail g.oranges@alice.it Direttore Generale: Sig.Vito BARBERA Via Cracovia 17 I-40139 Bologna, vito-barbera@alice.it cel. 3346473571 Segretario: Sig.Gabriele POGGIOLI, Via B. Arnaud 27 I-40127 Bologna

International contacts and delegate to ASIF Council Medical advisor Newsletter Editor(ial board) Articles published in 2008 and recommended for translation Further publications

segreteria@aispaitalia.it Dr. Giuseppe ORANGES (Presidente A.I.Sp.A.), Via Antonio Bondi 6, I-40138 Bologna Dr. Sergio GENERINI, Reumatologia, University of Firenze, aispa@aispaitalia.it Dr. Giuseppe ORANGES ( ad interim ) «SP.A.... – CI SONO ANCH‟IO!!!....» (3/year), Direttore responsabile (responsible editor): Dr. Giuseppe ORANGES (Presidente A.I.Sp.A.)

Guida per i pazienti (guidebook for patients) Programma di ginnastica in casa (program of home exercises) Esercizi di Prevenzione (preventing exercises) Economia Articolare (joint economy) in preparazione

Most important Annual members meeting events in past and coming year Financial sources Membership fees Mostly discussed problems and intentions

40% from sponsors, 60% from patients 30 € per l‟anno

ASIF member society in Japan:

(Japan Ankylosing Spondylitis Club, JASC) (1-11-5, Shinkawa Mitaka-shi, Tokyo, 181-0004 Japan) Ankylosing spondylitis patient societies world-wide January 2010 Please send corrections Reto Baliarda, ASIF webmaster, Leutschenbachstrasse 45, CH-8050 Zurich, Switzerland, reto.baliarda@bechterew.ch

(Foundation in 1991 initiated by Prof. SHICHIKAWA Kanji, Fakulty of Orthopedic Surgery, Shiga Medical College) Membership Report not received yet. In 2009: 363 paying members, including 277 AS sufferers 1. Jan. 200910 Local branches Board Office staff (how many employees?) Important persons running the society

no local branches with weekly exercises yet 24 AS sufferers no employees (president): TANAKA Kenji, 1-10, 6-chome, Shioya, Wakayama-shi, Wakayama, 641-0054 Japan,  (+81-734) 44-9146, Fax (+81-734) 44-8592 (general secretary): Dr. INOUE Hisashi (orthopedist at Juntendo University and AS sufferer), (1-11-5, Shinkawa, Mitaka-shi, Tokyo, 181-0004 Japan)  (+81-422) 45-7985, Fax (+81-422) 49-6817, eMail: f w i f 1 0 0 5 @ m b . i n f o w e b . n e . j p

International contacts and delegate to ASIF Council Medical advisor Newsletter

Editor Articles published in 2008 and recommended for translation Further publications Most important events in past and coming year Financial sources Membership fees Mostly discussed problems and intentions

Dr. INOUE Hisashi (= general secretary)

Dr. INOUE Hisashi (= general secretary) [rakuchin] (2 per year) [tomonokai dayori = Club diary booklet] (2 per year) Dr. INOUE Hisashi (= secretary-general)

(Guidebook for patients written by Dr. INOUE Hisashi) (Japanese translation of American guidebook for patients) 2008: JASC meeting in Tokyo 2009: JASC meeting in Kyoto 100 % membership fees and donations ¥ 3000/year (patient members or supporting individual members) ¥ 10000/year (supporting group members) Offering the medical information to patients Cultivate mutual friendship Enlighten the general public and medical practitioners on knowledge of AS Foundation of branches

ASIF member society in Moldavia:Aurel Sarivan & Prosperitate Founded in 2007

c/o Aurel SARIVAN ; 87, Str. Vasile LUPU, ap.44 ; 2008/5 MD Chisinau, MOLDAVIA Tel. (+373) 22719777 eMail: s_aureliu hotmail.com Membership 32 members including 9 with ankylosing spondylitis 1. Jan. 200910

Local branches

2 branches

Board

President: Aurel SARIVAN (AS patient, Lieutenant-Colonel in reserve; graduated from the «Defence College» of Paris), address given above Vice-president: Iulia SARIVAN (graduated from the Azerbaijan Petrol Academy. works at the National Metrological Institute as metrology engineer

International contacts and delegate to ASIF Council

Aurel SARIVAN (AS patient, speaks fluently French, Rumanian, Russian and moderately also English); address see above

Newsletter )

We distribute a Newsletter for AS patients, including news on current AS research and experiences of patients how they cope with medical and social problems (2/year)

Most important Meetings where patients can exchange experiences and can get news on current research on the disease. We events in past consider patient education as essential in the disease management. and coming year

Membership fee

60 lei per year Our mission is • To support patients with ankylosing spondylitis by giving them information about the disease; To contribute to civic education, strengthening and promotion of civil society and democratic institutions in three selected villages. Our primordial project for patients with ankylosing spondylitis is to build a rehabilitation centre for AS patients in Siscani-Afumati, where AS patients can be treated with new approaches of the classical medicine and with physical exercises by using gymnastic balls, exercise mats, cycling machines, the sauna, and a warm hydrotherapy pool. We collect funds for this project, The cost is estimated at € 7 000. We collected already 18%.

ASIF member society in the Netherlands:

Reumapatientenbond/Werkgroep Bechterew Postbus 1370, 3800 BJ Amersfoort,  (+31-33) 461 63 64, Fax (+31-33) 4651200 Disease-specific Internet pages do not exist. Internet homepage of Reumabond: www.reumabond.nl eMail address of Reumabond: info@ reumabond.nl

(Foundation in 1979 initiated by Andreas L. ENGELMANN) Membership 1. Jan. 2009

The Reumapatientenbond has 29 000 members including about 10% AS patients

Local branches

14 local ankylosing spondylitis societies in Stadskanaal, Emmen, Nijmegen, Beverwijk, Heerenveen, Hilversum, Hoorn, Leeuwarden, Leiden, Eindhoven, Maastricht, Midden-Limburg, Noord-Limburg, ZuidLimburg.

+ 40 AS groups with weekly exercises within local social leagues Members of the Werkgroep Bechterew all are AS patients Board The Reumapatientenbond has 11 FTE employees Office staff Mostly impor- Voorzitter (chairman): Peter KOOIJ tant persons Directeur: vacant, ad intrim Marga SCHRIEKS running the Morbus Bechterew representative: Cor VAN DROGEN society International Mr. Cor VAN DROGEN (member of werkgroep Bechterew and of werkgroep international) contacts and Postbus 1370, 3800 BJ Amersfoort, cvdrogen@wxs.nl delegate to ASIF Council

Medical advisors

Prof. Dr. R.G. PÖLL Dr. W.F. LEMS Prof. Dr. Sjef VAN DER LINDEN, Maasstricht

Newsletter Editor(ial board)

«In Beweging» (newsletter of Reumapatiëntenbond, 11/year) Mrs. Noortje KRIKHAAR Some local AS societies publish their own newsletter Further «De ziekte van Bechterew – dit is ook reuma» (AS – likewise a rheumatic disease) publications «De ziekte van Bechterew – reuma, u weet het pas» (AS – rheumatism, recently you know) «De ziekte van Bechterew – Thuisoefeningen» (AS – home exercises) Most impor- 2009: to bring out AS-pass and AS-DVD

tant events 2010: to distribute the AS-pass in past and coming year Financial sources

90% from special funding organisation, 2% membership fees, 8% others

Membership fee

20 € annual fee

ASIF member society in Norway:

Norsk Revmatikerforbund (NRF) / BEKHTEREV Postboks 2653 Solli, N-0203 OSLO,  (+47) 22 54 76 00, Fax (+47) 22 43 12 51 eMail address: p o s t @ r e v m a t i k e r . n o

Homepage of NRF: h t t p : / / w w w . r e v m a t i k e r . n o H omepage of BEKHTEREV section: h t t p : / / w w w . b e k h t e r e v . c o m

(Foundation in 1986 by NRF) Membership Report not received since 2008 1. Jan. 200910 In January 2008: about 2 300 patients with ankylosing spondylitis in Bechterew groups

(out of more than 40 000 NRF members; diagnosis of members not known to NRF) Local branches 13 local AS societies with weekly exercises;

about 50 AS representatives in ordinary local NRF branches Chairman NRF Njål IDSØ, Post-box 2653 Solli, N-0203 Oslo,  (+47) 22 55 72 16, Mob (+47) 91 69 13 40, AS Representative in NRF International contacts and delegate to ASIF Council Journal

njaalid@online.no Jon HAGFORS, Biskop Heuchs vei 44, N-0871 Oslo,  (+47) 22 18 12 60, jon.hagfors@ c2i.net Jon HAGFORS, Biskop Heuchs vei 44, N-0871 Oslo,  (+47) 22 18 12 60, jon.hagfors@ c2i.net AS pages in "Revmatikeren" (newsletter of NRF, 8/year)

Disease"Bechterewer'n" (4/year), journal of Oslo Beckterev-Forening (www.bekhterevern.no) specific journal with subscribers in all parts of Norway

edited by Mrs. Kirsten STABELL  (+47) 22 57 25 13, eMail: k s t a b e l @ o n l i n e . n o Some local AS branches have there own newsletter. Articles published in 2008 and recommended for translation Further publications

«Bekhterevs sykdom, Informasjon til nydiagnostiserte, pårørende, helsepersonell og andre 07» (Bekhterev disease, Information to new diagnostic, relatives, health personal and others, 2007) «Bekhterev informasjonsfolder» (AS information folder) 2007 AS: Disease impact and research evidence of physiotherapy interventions, Faculty of Medicine University of Oslo 2005 «Informasjonsmappe til nydiagnostiske Bekhtervere, 2007» (Information package for new diagnostic AS patients) «Spørsmål og svar om bekhterevs sykdom for pasienter» (Questions and answers about AS, revised 2007) «Bekhterev Trening video» (Training video for AS patients) VHS, DVD «Bekhterev Trening lydkasset» (Training audio cassette for AS patients) MC, CD Most important 2008: 11–13 April: AS seminar, Country conference, National arrangement for AS branches & events in past representatives. Election of representatives to national rheumatic society congress 19.-21. Sept 21. Feb:What is new in research and treatment for AS patients (local branch Trondheim Norway) and coming 28. April: Latest news in research and treatment for AS patients (local branch Oslo Norway) year 2009: Similar events are planned in different parts of the country in cooperation with the local branches Financial Local AS branches get 1/5 of the fee paid by their members to NRF sources Branches can apply for financial support from local authorities Membership NOK 350 yearly, fees NOK 490 per family, NOK 175 for children younger than 25 years NOK 2000 for companies and other institutions (subscription to newsletter of AS group in Oslo from other parts of Norway: NOK 200)

ASIF member society in Portugal:

Associação Nacional da Espondilite Anquilosante (ANEA) Rua de Platão, n.º 147 – Zambujal - 2785-698 S. Domingos de Rana, Portugal,  Apartado 69 – 2646 – 901 Alcabideche - Portugal Tel. (+351-21) 4549200. Fax (+351-21) 4549208. E_MAIL:anea@anea.org.pt Home Page in Internet: (URL):http://www.anea.org.pt (Foundation in 1982 initiated by 3 AS patient‟s as Núcleo de Espondilite Anquilosante = NEA) Membership 2716 paying members including ca. 1650 AS sufferers. 1. Jan. 200910 Local branches S. Domingos DE RANA and 11 local branches in Coimbra, Ovar, Ponte Lima, Viseu, Leiria, Lisboa, Vila

Real, Porto, Braga, Cova da Beira, and Algarve. Weekly exercise classes: S. Domingos de Rana, Viseu, Pombal, Ovar, Braga and Leiria. Board 5 board members (5 AS sufferers) 3 board members (2 AS sufferers and 1 physician) in each local branch Office Staff Secretary General - JORGE Manuel Rocha de Oliveira NUNES I Important President: Justino Mendes DOS SANTOS ROMÃO. persons Vice-president: Vicente Augusto ALFACINHA DA SILVA running the Secretary: Pedro Afonso SILVA society Treasurer: José Lemos CUNHA CRUCHINHO Delegate to Dr. Justino Mendes dos Santos ROMÃO – de Platão, n.º 147 – Zambujal - 2785-698 S. Domingos DE ASIF Council RANA, Portugal Medical ANEA also have a board of different specialists for specific problems. advisors Rheumatologist : Dr.ª Fatima GODINHO Physiatrist DR.ª Cristina LOURENÇO Newsletter «Boletim da A.N.E.A.» (4 times/year) Editorial Director: Dr. Justino Mendes dos Santos ROMÃO board Redactors: Direcção da Anea Further «Cadernos Espondilíticos» (2 booklet on ankylosing spondylitis): publications I – Guia de alerta e defesa do espondilítico (guidebook for patients); II – Programa de Ginástica no domicílio (home exercises for six days of the week, 2nd edition) Glossário de Termos Clínicos de apoio ao Doente com EA (Medical glossary for AS patients) Cadernos SNR N° 17 – Manual da Espondilite Anquilosante (AS manual by Dr. Filipe ROCHA) Portuguese edition of «Car driving with ankylosing spondylitis» by Dr. Jon ERLENDSSON Espondilite Anquilosante Os Factos. Portuguese edition of “Ankylosing spondylitis – the facts” by Dr. Muhammad Asim KHAN Portuguese edition of «Touchpoints sobre Espondilite Anquilosante» Most important November 2009 : Annual ANEA meeting in Viseu events in past Commemoration of XXVII anniversary NEA/ANEA - 1982 – 2009 and coming May 2010: World Ankylosing Spondylitis Day November 2010: Annual ANEA meeting year Financial sources

70% government funding 10% donations from private enterprises 10% membership fees 10% local council funding

Membership fees

15€ Annual fee

Mostly Foundation of additional branches: discussed problems and Establishing local exercise groups soon. intentions

ASIF member society in Singapore:

Singapore Ankylosing Spondylitis Club (SASC) c/o National Arthritis Foundation, 371 Beach Road, #19-08 The KeyPoint, Singapore 199597  (+65) 6227-9726, Fax (+65) 6220-2116 eMail address of National Arthritis Foundation: i n f o @ a r t h r i t i s . o r g . s g Internet Homepage: h t t p : / / w w w . a r t h r i t i s . o r g . s g

(Foundation in 1990 initiated by rheumatologists and their patients) Membership Report not received yet. 1.Jan. 2009: 169 paying members (100 % AS sufferers) 1. Jan. 200910 Local branches 1 local branch with weekly exercises (physiotherapy). Board

9 sufferers and 3 physiotherapists

Office staff

Administration by National Arthritis Foundation

Mostly important persons running the society Medical advisors

President: Mrs LOW Yin Peng Vice president: Mr. LEE Swee Huat Secretary: Mr LAU Won Sen Treasurer: Mr. NG Lee Hwee (lynn@arthritis.org.sg) Dr. HOWE Hwee Siew Dr. KOH Wei Howe Dr. B. P. Mozoomdar Dr. LAU Tang Ching None

Newsletter Editor(ial board) Further publications

None

Most impor- In 2008: 1. Six sessions of Tai-Chi class were conducted during the weekly exercise. 2. Two talks were organised for AS members. tant events 3. A dinner cum talk was organised for Mr. Best Weiss, the founder and 1 st president of SASC in past and during coming year his visit to Singapore on 16th July 2008 to share his personal life experience.

Financial sources Membership fees Mostly discussed problems and intentions Remarks

4. SASC organised the 1st hydrotherapy sessions at KK Women‟s and Children‟s Hospital (KKWCH) on 12th July 2008. In 2009: 1. To organise annual meetings and dinner talks for members 2. SASC tries to find alternative venues to organise the hydrotherapy session for members because KKWCH does not cover insurance for SASC members. 100% from National Arthritis Foundation (SASC is a subcommittee under NAF)

S$ 12 per annum (ordinary membership), S$ 100 for life membership 1. To encourage members to participate in exercise classes 2. To encourage more AS patients to join the Club 3. SASC tries to explore the use of public / private pool for the hydrotherapy session to be conducted by KKWCH physiotherapist. Our SASC is under the umbrella of the National Arthritis Foundation. All correspondence can be sent to NAF and they will forward it to us.

ASIF member society in Slovenia:

Društvo revmatikov Slovenije (Rheuma Society of Slovenia) c/o Marjan HUDOMALJ, Parmova 53, SI-1113 Ljubljana,  (+386) 590 753 66 and (+386) 1 26 24 56 e-mail address: d r u s t v o @ r e v m a t i k i . s i

(Foundation in 1983) Membership ca. 2800 members 1. Jan. 200910 (ca. 2300 with ankylosing spondylitis + ca. 500 with rheumatoid arthritis) Local branches 13 local branches with weekly exercises for people with ankylosing spondylitis, all under professional guidance Board 7 patients: 5 with ankylosing spondylitis, 1 with rheumatoid arthritis and 1 with juvenile idiopathic arthritis Office staff 1 full time + 3 half-time employees Important Predsednik: mag. Marjan HUDOMALJ, (address see above), e-mail: marjan@revmatiki.si persons Vize-Predsednik: Mr. Andrej GREGORĈIĈ, Laze 14, Uršna Gora, SI-8000 Novo Mesto, running the andrej@revmatiki.si society International contacts and delegate to ASIF Council Medical advisors

Newsletter Editor(ial board) Articles published in 2008 and recommended for translation Further publications

Marjan HUDOMALJ (address see above) Dominika NAVERŠNIK (representative in European Lupus Erythematosus Federation, ELEF) Prim. dr. Mojca KOS-GOLJA, doc. dr. B. MATOIC, Dr. Dušan LOGAR "Revmatik" (2-4 per year) Marjan HUDOMALJ, Tina CIGLEV (journalist) The cost-benefit analysis of being a rheumatic person – Slovenian data.

Various brochures «Being a rheumatic mother» by Monika Østensen «Disability – rights and benefits» (booklet) Occupational therapy booklet Early diagnosis Feeling good with exercise Be me (how to live with rheumatic diseases) Most important 2008: 25 Years of the society (international congress + meetings with pros.) events in past 2009: Round table: Strategy against rheumatism in Slovenia (steakholders, MPs, NGOs) and coming year Financial sources Membership fees Mostly discussed problems and intentions Remarks

5 % membership fees, 80 % state grants, 15 % donations 20 € yearly New antirheumatic drugs, alternative medicine, health legislation, social support Future development of the rheuma society of Slovenia Employment and self-employment EU projects – regional European projects National disability organisation with the representation prerogatives for all the people with rheumatic diseases, according to the world-wide law for disability societies Our intention is to broaden the activities also to social protection of the people with AS, RA etc. We take care predominantly for people with AS but also offer support to others who need it. People with RA etc. will have to organize their own groups with logistic support from us.

ASIF member society in Spain: Ankylosing spondylitis patient societies world-wide January 2010 Please send corrections Reto Baliarda, ASIF webmaster, Leutschenbachstrasse 45, CH-8050 Zurich, Switzerland, reto.baliarda@bechterew.ch

COORDINADORA ESPAÑOLA DE ASOCIACIONES DE ESPONDILITIS President: Manuel Puparelli Murat Address: C/ La Bañeza 7, Casa de las Asociaciones E-37006 Salamanca, Spain Tf: +34 692311 e-mail: espondilosalamanca@yahoo.es Membership 1. Jan. 200910 Local branches Board Office staff Important persons running the society

1650 members, (most of them people with AS) 22 regional societies with weekly exercises «Junta Directiva» consists of 7 AS patients arthritis no employees President : Manuel PUPARELLI Murat (address see above) The presidency and address of the Coordinator changes every two years to another regional association. Currently the Coordinator is represented by the regional society Asociación de Espondilitis Anquilosante de Salamanca. Carmen M. PASCUAL espondilosalamanca@yahoo.es

International contacts and delegate to ASIF Council Medical Dr. Javier DEL PINO. Jefe del Servicio de Reumatología. Hospital Universitario de Salamanca advisors Most important We are celebrating on 8th may the World Spondylitis Day with a Congress on AS. events in past and coming year

Every regional society pays 60€ per year. Membership fees Remarks

Our intention is to make aware as much as possible in press and audiovisual media the problems of people with ankylosing spondylitis

Member Organizations Almería Asturias

Badajoz Cádiz Ciudad Real

Córdoba

Fuenlabrada

Guadalajara

Granada

ASOCIACION DE ESPONDILITIS DE ALMERIA – ADEAL Presidente: Antonio López Morales; Tf: 950276668 - 617898039 ; adealmeria@yahoo.es; www.adealalmeria.es *ASOCIACIÓN DE ESPONDILÍTICOS ASTURIANOS (ADEAPA) TLF: 985238755 - 985322157 - 630665780; info@adeapa.com, www.adeapa.com Presidente: Ángel Rico Mon; Publications: guide of exercises for people with AS *ASOCIACIÓN EXTREMEÑA DE PACIENTES CON ESPONDILITIS – AEXPE Presidente: Paco Trejo Simoes; Tf: 924452626; fratesi@gmail.com; http://aexpebadajoz.blogspot.com/ ASOCIACIÓN JEREZANA DE ESPONDILITIS Y ARTRITIS – AJEREA Presidente: Tf: 607602731; info@ajerea.es; www.ajerea.es *ASOCIACION PROVINCIAL DE ESPONDILITIS ANQUILOSANTE Y OTRAS ESPONDILOARTROPATÍAS DE CIUDAD REAL - AEACR Presidente: José Antonio Cabanillas Jiménez; Tf: 658597017 ; info@aeacr.org; www.aeacr.org *ASOCIACIÓN CORDOBESA DE ENFERMOS AFECTADOS DE ESPONDILITIS (ACEADE) Presidente: José Blancat Ortiz; TLF: 957767700 – 957002040; aceade@fepamic.org; www.aceade.es Newsletter: Boletín informativo de ACEADE (4/year) Further publications:-Guía del paciente espondilítico (guidebook for AS patients, courtesy of NASS) -Vídeo de ejercicios de rehabilitación (video of exercises for rehabilitation, courtesy of LIRE) *ASOCIACIÓN DE ENFERMOS DE ESPONDILITIS DE FUENLABRADA (A.E.E.F.) Presidente: Pedro Plazuelo Ramos; TLF: 916976046 - 665595205; espondilofuenla@hotmail.com; www.espondilitisfuenlabrada.es *ASOCIACIÓN PROVINCIAL DE ENFERMOS REUMÁTICOS DE GUADALAJARA (A.P.E.R.G.) Presidenta: Mª Isabel Rivero Ramos; TLF: 949230116 - 658945492; apergreumaticos@hotmail.com; apergapergreumaticos.spaces.live.com *ASOCIACION GRANADINA DE ESPONDILITICOS (AGRADE) Presidente: Carlos Cuellar Sánchez ; TLF: 675603932 –658466783 ; delgado@ugr.es; www.espondilitisgranada.es Newsletter: Boletín informativo 4/year

Huelva

ASOCIACION DE ESPODILITIS ANQUILOSANTE ONUBENSE (ASONES) Presidente: Manuel Galán Moya; TLF: 959254894 – 658968152; Galanmanuel@terra.es

Jaen

*ASOCIACIÓN JIENENSE DE ESPONDILITIS ANQUILSANTE (AJEA) Presidente: Miguel Cabezas Melgarejo; TLF: 953267566 - 617164827 ; ajea@fejidif.org www.fejidif.org/ajea/ Publications: EA: La importancia de la Rehabilitación. Hospital de Jaén.

;

Leganés

*ASOCIACIÓN DE ENFERMOS DE ESPONDILITIS ANQUILOSANTE Y ENFERMEDADES REUMÁTICAS DE LEGANÉS - AEERL Presidente: Inés Ortiz Torralba; TLF: 916868974; aeerl@aeerl.jazztel.es; www.aeerl.jazztel.es Newsletter: Boletín informativo 4/year; Publications: Guía de tratamiento para pacientes con Espondilitis Anquilosante. 2004.

Málaga

*ASOCIACIÓN DE ESPONDILÍTICOS DE MÁLAGA (ADESDEMA) TLF: 952343004 Presidenta: Mª Mercedes Carmona Bueno; info@adesdema.e.telefonica.net

Móstoles

ASOCIACIÓN MOSTOLEÑA DE ESPONDILITIS Y ARTRITIS (AMDEA). Tel: 690 056 112; asociacionamdea@yahoo.es; http://www.amdea.webcindario.com. *ENFERMOS DE ESPONDILITIS PARLEÑOS ASOCIADOS (EDEPA) Presidente: Miguel Ángel García García-Rivera; TLF: 667328398 - 667328986 edepa@edepa.com; www.edepa.com Newsletter: Boletín Informativo. *ASOCIACIÓN VIGUESA DE ESPONDILÍTICOS DE PONTEVEDRA (AVIDEPO) Presidente: José Antonio Casero Lozano; TLF: 986419642-678586865 avidepo@telefonica.net; www.telefonica.net /web/avidepo Publication: La Espondilitis Anquilosante. 2001.

Parla

Pontevedra

Salamanca

*ASOCIACIÓN SALMANTINA DE ESPONDILITIS ANQUILOSANTE (ASEA) Presidente: Manuel Puparelli Murat; TLF: 692311519; espondilosalamanca@yahoo.es Newsletter: Boletín informativo

Sevilla

*ASOCIACIÓN DE ESPONDILITIS ANQUILOSANTE SEVILLANA (EAS) Presidente: José Manuel Delgado Cordero; TLF: 954436894; eas@asociacioneas.org; www.asociacioneas.org Newsletter: magazine 2/year “LinEAS”

Valdemoro

ASOCIACIÓN DE ESPONDILITIS DE VALDEMORO (ADEVA) Presidenta: Rosa Mª Alonso Peña TLF: 918952015 – 652094926 - 918956081; adevaldemoro@wanadoo.es

Valencia

*ASOCIACIÓN VALENCIANA DE AFECTADOS DE ESPONDILITIS (AVAES) Presidente: Florentino Cárdenas Ruiz; TLF: 961370560 - 620111779 avaespondilitis@yahoo.es; www.espondilitis.org Newsletter: Boletines informativos.

Valladolid

*ASOCIACION DE ESPONDILITIS ANQUILOSANTE DE VALLADOLID (ADEAVA ) Presidente: Julio San José Cartón; Tf: 615044538 – 600245551 adeava@hotmail.com; www.adeava.es

Zaragoza

*ASOCIACIÓN DE AFECTADOS DE ENFERMEDADES REUMÁTICAS DE ARAGÓN – ADARA Presidente: Javier Sanz Lostado; tf: 625923438 info@adara-aragon.org; www.adara-aragon.org

Name of Society: The Swedish Rheumatism Association

Address of Society: Box 12851, 112 98 Stockholm, Sweden, phone; + 46 8 505 805 00 visiting address: Alströmergatan 39, Stockholm Date founded, Name of founder: The 23 of November 1945 INTERNET address (if existing): www.reumatikerforbundet.org E-mail address (if existing): info@reumatikerforbundet.org

53 044 paying members, including about 3 500 AS sufferers Membership Local branches 194 local branches Board

Office staff

A National board with 13 members. President is Anne CARLSSON, mobile phone + 46 70 522 25 65, Address : same as office anne.carlsson@reumatikerforbundet.org Secretary General: Jan-OLOV SÖDERBERG, mobile phone +46 70 7301572, Address: same as office, Jan-olov.soderberg@reumatikerforbundet.org

Important persons running the society Delegate to ASIF Council

Steinar WALSÖ-KANSTAD, Soldattorpsvägen 9, 438 92 Härryda, phone: + 46 301 310 83, Mobile +46 70 576 48 98, steinar.walso-kanstad@reumatikerforbundet.org

Medical advisors

There is a special advisory group of researchers in the rheumatologic field.

Newsletter name

Reumatikervärlden Magdalena OLSSON

Editor Further publications

There are lot of publications about AS/ Bechterew, about the diagnosis and how to treat it. It is an important task for the association to update new knowledge in this field.

Most important A new patient school for AS patients is developed and new leaders are educated. events in past Special AS patient partner program is developed and AS patient partners are educated and coming year Financial sources Membership fees Mostly discussed problems and intentions

The Swedish Rheumatism Association has a budget of about 50 million SEK a year. 250 SEK a year for each member How to convince the government and the health authorities to spend more resources on the health care for patients with rheumatic diseases. How to get more resources to research

ASIF member society in Switzerland:

Schweizerische Vereinigung Morbus Bechterew (SVMB) Société suisse de la spondylarthrite ankylosante (SSSA) Società svizzera morbo di Bechterew (SSMB) Leutschenbachstr. 45, CH-8050 Zürich,  (+41-44) 272 78 66, Fax (+41-44) 272 78 75 e-mail address: m a i l @ b e c h t e r e w . c h Internet address: h t t p : / / w w w . b e c h t e r e w . c h

(Foundation in 1978 initiated by Dr. Heinz BAUMBERGER and Markus SCHILLING († 1983) Membership 1. Jan. 200910 Local branches Board Office staff

Important persons running the society International contacts and delegate to ASIF Council Medical advisors

Newsletter Editor(ial board) Articles published in 2008 and recommended for translation Further publications

3571 paying members, including 2827 AS sufferers 88 local branches with weekly exercises 6 AS sufferers 2 full-time employees, 2 part-time employees, 2 apprentices Geschäftsleiter (director): René BRÄM, Redaktor (newsletter editor): Reto BALIARDA Präsident: Prof. Dr. iur. Christine KAUFMANN, Zürich Vizepräsident: Walter HUBER, Rennweg 1, CH-8304 Wallisellen

Quästor (treasurer): Roland BRUNNER, Cholacherstr. 20, CH-5452 Oberrohrdorf Reto BALIARDA, SVMB, Leutschenbachstr. 45, CH-8050 Zürich. eMail: r e t o . b a l i a r d a @ b e c h t e r e w. c h

Dr. Michel BRAUN, Hôpital régional, CH-2900 Porrentruy Dr. Jean DUDLER, Hôpital Universitaire de Lausanne (CHUV), CH-1011 Lausanne Dr. Pascale EXER, Rheumatologische Praxisgemeinschaft, Missionsstr. 34, CH-4055 Basel Dr. Marc WIDMER, Rheumatologische Praxisgemeinschaft, Hinwilerstr. 6, CH-8620 Wetzikon

«vertical» (4/year) Reto BALIARDA (professional PR specialist), SVMB office (address see above)

in German: Schriftenreihe "Morbus Bechterew" Heft 7: Komplementärmedizin in der Therapie Heft 9: Morbus Bechterew – die Krankheit Heft 10: Morbus-Bechterew-Therapie Heft 11: 34 Persönlichkeiten – 1 Krankheit Heft 12: Leben mit Morbus Bechterew Morbus Bechterew: Gymnastik-Heimprogramm Video: Gymnastik und Sport

in French: Série "La spondylarthrite ankylosante" Cahier 3: La médecine complémentaire en renfort Cahier 9: Spondylarthrite ankylosante – la maladie Cahier 10: Spondylarthrite ankylosante – la thérapie Cahier 11: 34 personnalités – 1 maladie Programme de gymnastique à domicile Vidéo: Gymnastique et sport

in English: Video tape: Gymnastics and sports

in Italian: Morbus Bechterew – la malattia Morbus Bechterew – la terapia

Most important events in past and coming year

2009: Annual member meeting 6/7 June in Chur 2010: Annual member meeting 29/30 May in Berne

Financial sources Membership fees

State subsidies 30 %, membership fees 20 %, donations 20 %, other sources 30 %

Mostly discussed problems and intentions

SFr. 50,- per year for members in Switzerland SFr. 55,- per year for members abroad Attract the attention of general practitioners to AS

ASIF member society in Taiwan:

(Ankylosing Spondylitis Caring Society of R. O. C.) c/o James C. Wei, MD, Division of Allergy, Immunology and Rheumatology Chung Shan Medical University, Taichung, Taiwan 110, sec.1, Chien Kuo N. Road, Taichung 402, Taiwan (Foundation in 1996 initiated by Prof. Hwa-Chang LIU, National Taiwan University Hospital, Taipei) eMail address: w e i 3 2 2 8 @ m s 3 . h i n e t . n e t Internet address: w w w . a s c a r e . o r g . t w Membership In January 2010: Ca. 900 paying members including 750 AS sufferers 1. Jan. 200910 Local branches Kaohsiung branch: Kaohsiung Medical College, Department of Immunology and Rheumatology Board 20 AS sufferers Office staff 1 part-time employee President and international contacts

Medical advisors

Newsletter

James C. WEI. M.D. Division of Allergy, Immunology and Rheumatology Chung Shan Medical University 110, sec.1, Chien Kuo N. Road, Taichung 402, Taiwan  (+886-4) 24739595 # 4714 Fax (886-4) 24739220 Prof. Hwa-Chang LIU, Department of Orthopaedic Surgery. National Taiwan University Hospital; Dr. Shiaw-Yi LIN, Department of Rheumatology and Immunology, Veterans General Hospital Dr. Chung-Tei CHOU, Department of Rheumatology and Immunology, Veterans General Hospital Dr. Wen-Chan TSAI, Department of Immunology and Rheumatology, Kaohsiung Medical College Newsletter of the Ankylosing Spondylitis Caring Society of R. O. C. (4 per year)

Editor

Dr. Wen-Chan Tsai, Department of Immunology and Rheumatology, Kaohsiung Medical College Further publications

(AS Guidebook) (AS Passport) (AS collection book) (Living with AS) (Video tape and Video CD)

Most important events Financial sources Membership fees Mostly discussed problems and intentions Remarks

100% from membership fees and donations N.T. 1200 annually Offering the medical information to patients Cultivate mutual friendship Enlighten the general public and medical practitioners on knowledge of AS We have collected an «AS data bank» in Taiwan, including serum and DNA samples as well as clinical data of 300 AS patients and 150 healthy controls Further nation-wide studies are ongoing with Dr. Wordsworth in UK and Dr. Yu in USA

ASIF member society in Turkey:

Ankilozan Spondilit Hasta Derneği (ASHAD) (Ankylosing Spondylitis Patients Society) PK: 90 Bornova, 35040 Izmir, Turkey Tel : +90-533-512 1548; Fax: +90-232-375 5044

Internet homepage: www.ashad.org; eMail address: ashad2003@gmail.com (Foundation in 2003 initiated by Dr. Tuncay Duruöz) Membership 85 members, 80 of them with AS 1. Jan. 2009Jan. 2010 Local Ankara and Antalya (will be founded in 2 months) branches Board

Office staff International contacts

Medical advisors

7 board members including 4 AS patients: Başkan (President): Doç. Dr. Tuncay DURUÖZ - Celal Bayar University, Medical School, PM&R Department, Rheumatology Division, Manisa, 45010, Turkey - ASIF Executive Committee Member - Turkish League Against Rheumatism (TLAR) Executive Committee Member Yönetim Kurulu (Board members): Prof. Dr. Bülent BÜTÜN (Antalya) Prof. Dr. Haşim ÇAKIRBAY (Ankara) Yrd. Doç. Dr. Yasemin TURAN (Aydın) Mr. İbrahim AKDOĞAN (Manisa) Mr. Erdem GÜRTEPE (Istanbul) Mr. Nuri GENCER (İzmir) None Doç. Dr. Tuncay DURUÖZ, Celal Bayar University, Medical School, PM&R Department, Manisa, 45010, Turkey,  +90-542-252 5512; Fax +90-232-375 5044; duruoz@superonline.com Prof. Dr. Bülent Bütün, Akdeniz University Medical School, PM&R Department, Rheumatology Division, Antalya, Turkey. Prof. Dr. Haşim ÇAKIRBAY, Fatih University Medical School, PM&R Deparment, Ankara, Turkey

We are planning to publish online newsletter (4 issues per year) on our website (www.ashad.org) in 2010 3 brochure (information about AS and exercises) Further publications Patient version of ASAS/EULAR recommendation for AS treatment in Turkish. http://romatizma.dergisi.org/text.php3?id=324 Most important In 2009: Local meetings such as Euroasia AS meeting in Istanbul, on April 2009 Newsletter

Events in past and coming year

: ASHAD had a booth at 5th World Congress of PM&R on June 2009.

Financial sources (in %)

Membership fees (70%), donations (30%)

Membership fees

6 YTL (about 3.50 €) per year

Remarks

We have a legal rights advisor (from Ankara) who helps participants of our internet forum about official reglements. With his help many AS patients became retired and got their social and financial rights easily.

ASIF member society in USA: Spondylitis Association of America (SAA) P. O. Box 5872, Sherman Oaks, CA 91413,  (+1-818) 981-1616, Fax (+1-818) 981-9826 eMail address: I N F O @ s p o n d y l i t i s . o r g Internet homepage: h t t p : / / w w w . s p o n d y l i t i s . o r g

(Foundation in 1983 initiated by Mrs. Jane BRUCKEL and 10 other sufferers) Membership Report not yet received: 1. Jan. 2009: Approximately 5 500 members, mainly people affected by sponylitis 1. Jan. 200910 and their families Local branches We support a network of approximately 35 support groups across the United States Board

10 members on our board of directors

Office staff

11 staff members

Important persons running the society

Board Chairman: Michael SUPANCICH, MD Executive Director: Laurie M. SAVAGE

Delegate to ASIF Council

Executive Director Laurie M. SAVAGE

Medical advisors

Medical and Scientific Advisory Board comprised of 18 members Chairman: Robert A. COLBERT, MD, PhD

Newsletter Editor

«Spondylitis Plus» (4 per year) Laurie M. SAVAGE

Straight Talk on Spondylitis, new edition 2008 Your Guide to Living with Ankylosing Spondylitis Spondyloarthritis: A Family of Related Diseases Iritis [Eye Inflammation in Spondyloarthritis] The Role of Exercise in Spondyloarthritis Childhood Onset Spondyloarthritis What is Ankylosing Spondylitis (AS)? Ankylosing Spondylitis: Also a Woman‟s Disease Spondyloarthritis: Just Diagnosed Go to www.spondylitis.org for complete list of publications. Most important 2008: Spondylitis Educational Seminars in Atlanta, Denver, Minneapolis, Philadelphia, Dallas and San events in past Francisco and coming 2009: Spondylitis Educational Seminars in Miami, Kansas City, Houston, Las Vegas, Philadelphia Further publications

year Financial sources

Membership fees Additional activities and intentions

Remarks

51% membership fees and donations 34% corporate and foundation grants 7% government grant for genetic project 8% other $ 25 per year within the US, $ 40–50 per year for non-US residents National Recruitment Center for TASC Genetic Study In 2009, will launch first Training Video Module for Emergency First Responders to manage spondylitis patients in an emergency setting educational video 30 mins In 2009, will launch validated AS Screening Tool SWIFT (Spondylitis Web Info For Teens) – www.teens.spondylitis.org We would like all mail to be sent to the P. O. box listed above. ASIF member organisations should send only 1 copy of each newsletter!