W O R L D C M L D AY 2 0 1 7 C M L A D V O C AT E S N E T W O R K A C T I V I T Y R E P O R T W W W. C M L A D V O C AT E S . N E T # W C M L D AY 1 7 # T O D AY T O G E T H E R
W O R L D C M L D AY 2017 PA R T I C I PAT I O N • 60 CML ADVOCATES
NETWORK MEMBERS • 51 COUNTRIES • 6 WORLDWIDE REGIONS • OTHER PARTICIPANTS:
Pharma Companies, Doctors, Medical Centers, Patients, Media, Collaborators …
W O R L D C M L D AY 2 0 1 7 I M PA C T
WESTERN EUROPE 14 CML MEMBER ORGANISATIONS Denmark: LYLE, Association for lymphatic cancer and leukemia Finland: The Finnish CML Patient Network Germany: Parents' Organisation for Children with CML (Elternverein für Kinder mit CML e.V.), German Leukemia and Lymhoma Aid (DLH, Deutsche Leukämie- und Lymphom-Hilfe e.V.), Leukämie-Online / LeukaNET Greece: K.E.F.I. of Athens, the Association of Cancer Patients of Athens Italy: Gruppo AIL Pazienti Leucemia Mieloide Cronica Netherlands: Stichting Hematon, Hematon Leukemie en MDS Portugal: Portuguese Leukemia and Lymphoma Association Spain: AELEMIC, Asociación Española Enfermos Leucemia Mieloide Crónica, Pacientes LMC Sweden: Blodcancerförbundet United Kingdom: CML Support - , Leukaemia CARE
GERMANY The German LeukaNET / Leukaemie-Online.de and the “Parents' Organisation for Children with CML” (Elternverein für Kinder mit CML e.V.) in partnership with the German CML Alliance and the German Society of Hematology and Oncology (DGHO) celebrated World CML Day 2017 in Berlin and Potsdam, Germany. The following actions were undertaken: 1. Press conference with patients and doctors were informing in the house of Bundespressekonferenz under the motto "World Day of Chronic Myeloid Leukemia: Therapy Revolutionized, Addressing New Challenges”. 2. LeukaNET / Leukaemie-Online.de and the German CML Alliance as well as the DGHO made a public campaign at the foot of the Berlin TV tower at Berlin Alexanderplatz, supported with a small pavilion, distributing balloon-shape chromosomes and information about CML. . 3. LeukaNET held its annual patient meeting for patients from Germany, Switzerland and Austria. Prof. Dr. Andreas Hochhaus (German CML Alliance, University Clinic of Jena) and Prof. Dr. Bernhard Wörmann (DGHO) informed over 100 participants about the latest developments in CML therapy and the German healthcare system.
GREECE K.E.F.I. of Athens, the Association of Cancer Patients of Athens in Greece held the event "Hematological Cancer: Prevention - Treatment - Cure� with the participation of representatives of dierent patient organisations, CML patient advocates, hematologists, auxiliary doctors and clinicians, professors, psychiatricts and general public sharing also information on their website and social media channels.
FINLAND The Finnish CML Patient Network supported #WCMLDay17 since Helsinki sharing #CML patient information and an educational video
ITALY The “Gruppo AIL Pazienti LMC” (Italian AIL’ CML Group) celebrated World CML Day 2017 holding: 1. On Sep 22nd an online webinar on the subject “State of the art and future perspectives in CML treatment” with lecturers by CML specialists, a speaker from AIL CML Patients group and a Q&A session for patients and caregivers. 2. On Sep 24th, holding a “Fitwalking for AIL”, a 3K non-competitive fitwalk in the wonderful Pincio Terrace (Villa Borghese), in the very centre of Rome. Patients, families, doctors and the whole community, guided by Fitwalking trainers, will gather to celebrate and encourage scientific research.
NETHERLANDS Hematon from Netherlands was supporting #WCMLDay17 and #TodayTogether on digital channels (website and social media) and also planning to bring out a new patient booklet on CML on the Hematondag Zuid on October 7th. Additionally, a hematonic ďŹ lm has recently been released on the disease.
PORTUGAL APLL, Portuguese Leukemia and Lymphoma Association, was present in the Bom Sucesso Market and the Manuel Antรณnio da Mota Foundation joining the Foundation for a PopUp - Vozes Portateis free concert in a familiar conviviality.
DENMARK LYLE, Association for Lymphoma, Leukemia and MDS from Denmark was supporting #WCMLDay17 and #TodayTogether on digital channels sharing educational information, news, videos and CML patient experiences.
SPAIN Celebrating #TodayTogether from Spain, AELEMIC developed a CML training at the Faculty of Medicine of the University of Murcia raising awareness and informing future doctors about #CML and #patients needs. AELEMIC also held the 2nd CML National Congress on 6 October, Barcelona, Spain. "Because life does not end with a diagnosis, help us to continue." Our member Pacientes LMC was participating in Facebook and Twitter raising awarenes about #TodayTogether topics and especially about its TKI’s side effects survey and results. This group has been the most active on Twitter supporting the CML Advocates Network campaign as one of the main #WCMLday17 influencers.
SWEDEN The Swedish member Blodcancerfรถrbundet has been sharing #TodayTogether information in its website, Facebook and Twitter, raising awarenes about #WCMLday17 topics
UNITED KINGDOM Our member from the United Kingdom, CML Support were sharing #WCMLDay17 and #TodayTogether information during 9/22. Leukemia Care were additionally developing dierent online activities as a broadcast live with CML patients especially focus this year on treatment-free remission (TFR) topic.
ASIA AND PACIFIC 9 CML MEMBER ORGANISATIONS
Australia: Leukaemia Foundation India: Friends of Max Indonesia: Indonesian CML & GIST Community (ELGEKA Indonesia) Malaysia: Max Family New Zealand: Leukaemia & Blood Foundation Philippines: Touched By Max South Korea: Korea Blood Cancer Association Thailand: Thai CML Patients Group Vietnam: Max’s Vie
AUSTRALIA Leukaemia Foundation form Australia was also supporting #WCMLDay17 and #TodayTogether sharing CML patient testimonies to a better understanding about what CML is, its diagnosis and treatment and other practical information on how to live well with CML.
INDIA The Max Foundation (India & South Asia) through its Patient Support Group Friends of Max was hosting events in several cities to mark the landmark date. Their efforts on 22 Sept was orchestrated to give hope and dignity celebrating successful meetings in hospitals in Mumbai, Hyderabad, Chandigarh and Coimbatore. The venues - Tata Memorial Hospital (Mumbai), NIMS Hospital (Hyderabad), PGI (Chandigarh) and Coimbatore Kidney Centre (Coimbatore), was be graced by their physician partners, whose support throughout the years has been invaluable getting audiences of over 800 people. The bouquet of activities includes presenting special blue ribbons to mark the 20th anniversary of Max, an interactive quiz, presentation of posters to physicians, a session on “Movement Therapy” and importantly, sharing information with patients during interactive sessions. Friends of Max have had a great activity on social media with #TodayTogether #WCMLDay17
INDONESIA In order to commemorate World LGK Day 2017, ELGEKA Patient Representatives from several regions such as from Jakarta, Bandung, Solo, Semarang, Surabaya, Makassar, Malang, Sumatera and Kalimantan met in Yogyakarta at the National Meetings Meeting of the Society of Concerned Care of ELGEKA 23 September 2017. The team from Jakarta and Bandung, made a long journey of more than 8 hours using the bus to Yogyakarta. Elgeka was supporting #WCMLDay17 #TodayTogether with many images, empowering messages, videos and inspiring activities even raising awareness with tourists!
MALAYSIA Max Family Society Malaysia had an active participation online through social media channels and this organisation invited the healthcare providers to witness how the survivors have transformed the given treatments into the contribution and influence to the society. The people they cross path with, would be the people who play important roles in our shared future. The Cancer Touches Everyone Photo Exhibition is an effort to bring about awareness of the contributions of the patients in their societies. The intimate photos of the survivors highlight their transformation from the pain to empowerment and contribution.The photo exhibition was officiated by Deputy Director of Medical Development Division, Ministry of Health, Datin Sri Dr Asmah bt Samat and several newspapers, media and TV channels were sharing #WCMLDay17 #TodayTogether activities.
NEW ZELAND On Friday 22 September Leukaemia and Blood Foundation from New Zeland was developing a live Facebook presentation on ‘CML – Recent Advances’ by Dr Peter Browett, a haematologist at Auckland City Hospital and Diagnostic Medlab and Professor of Pathology at the University of Auckland School of Medicine, celebrating #WCMLDay17 #TodayTogether
PHILIPPINES
Touched By Max, Inc. at The Philippines celebrated the #WCMLDay17 #TodayTogether by giving out items to the morning joggers of Quezon Memorial Circle and blue ribbon signifying the 20th founding anniversary of The Max Foundation. They also held the CML Lay Forum at Philippine General Hospital on September 22, 2017. Attended by more than 100 patients, TBM gave "hygiene kits" to these patients and also cancer patients on the ward section of the hospital. This day ended with a cake celebration with PGH oncologists and haematologists.
SOUTH KOREA Korea Blood Cancer Association (KBCA) participated in #WCMLDay17 #TodayTogether raising awareness on 9/22 with various campaigns and activities and sharing also information on social media channels.
THAILAND In Thailand we have started the campaign by spread out the cartoon info graphic about CML in Thai and give away the T-Shirt 100 prices. After people share and hash-tag the word #thaicml2017 and send us back the screen short, we sent out the T-shirt to them. After they received the T-shirt, they ware it and send us the picture. We collectED all the picture and create the albums and on 22nd Sept we release the cartoon with the Voice over version and boost the facebook ads targeted to reach the 100,000 people in Thailand in 1 day.
VIETNAM
Max’s View CML patient group from Vietnam was celebrating #WCMLDay17 #TodayTogether having a warm gathering, sharing their feelings and stories that encourage them to continue the treatment path shared in social media.
NORTH AMERICA 4 CML MEMBER ORGANISATIONS
Canada: The Canadian CML Network USA: CML Busters Family Support Group of California, The Max Foundation, The National CML Society
CANADA
The Canadian CML Networks was participating in #WCMLDay17 #TodayTogether campaign supporting all CML Advocates Network member activities worldwide and sharing messages and information on social media.
USA
The Max Foundation was celebrating #WCMLDay17 #TodayTogether supporting CML patient organisations and HCPs in countries as Bhutan, Papua New Guinea, Nepal, Pakistan, Sri Lanka, Bangladesh, Bolivia, Nicaragua, Mexico, Fiji...and many more regions worldwide! The Max Foundation was also sharing the campaign and many activities on social media channels. The CML Busters Family Support Group of California and the National CML Society were also participating in the social media campaign.
LATIN AMERICA 8 CML MEMBER ORGANISATIONS Argentina: ALMA - Asociación Leucemia Mieloide Argentina Brasil: Associação Brasileira de Linfoma e Leucemia, “ABRALE” C h i l e : C o r p o r a c i ó n N a c i o n a l Maxivida Chile Colombia: Fundación Colombiana de L e u c e m i a y L i n f o m a ( F C L ) , Fundación Esperanza Viva (Hope Alive Foundation) Costa Rica: AGALEMO (Leucemia a s o c i a c i ó n d e p a c i e n t e s c o n leucemia y mieloma) Guatemala: ASOPALEU - Asociación de Pacientes con Leucemia Mieloide Crónica Peru: LUZ DE ESPERANZA
ARGENTINA
ALMA, Asociaciรณn Leucemia Mieloide Argentina was participating in #WCMLDay17 #TodayTogether very active on social media sharing images and messages of CML patients giving hope and raising #CML awareness.
BRASIL
From Brasil, Associação Brasileira de Linfoma e Leucemia, "ABRALE" participating in #WCMLDay17 #TodayTogether with images, videos sharing CML information through the website and social media.
CHILE
Chile was celebrating #WCMLDay17 #TodayTogether campaign visiting many cities as Hospital Sótero del Río, San Borja Arriarán, El Salvador,Región Metropolitana, Talca, Iquique, Concepción, Quinta región and Tancagua, surprising many doctors and hospitals where CML advocates were sharing experiences, smiles and wonderful moments.
COLOMBIA
The Esperanza Viva Foundation in Colombia performed in the city of Medellin the second national meeting of patients with chronic myeloid leukaemia with the participation of recognized doctors and leaders in patient's rights, sharing also information through a press release with #WCMLDay17 and #TodayTogether and social networks. The Fundaciรณn Colombiana de Leucemia y Linfoma (FCL) were participating in social media with #TodayTogether #WCMLDay sharing patient experiences and CML information.
COSTA RICA
Agalemo from Costa Rica held the III Hemato-Oncological Diseases Meeting addressed to patients, families and healthcare providers with the assistance of more than 140 people. Several talks of patients, doctors and pharmacists dealt with dierent hot topics such as access to TKIs. Finally, all attendees celebrated life dancing and enjoying together. Agalemo shared the campaign #WCMLDay17 and #TodayTogether on social networks and raised awareness through local television interviews.
GUATEMALA
Asopaleu, the association of patients with chronic myeloid leukemia in Guatemala, celebrated #WCMLDay17 #TodayTogether with dierent activities: Several hemato-oncologists, a palliative care physician and a biologist chemistry with experience in PCR gave a talk for patients. In the afternoon they held a reiki workshop, Zumba classes, a talk on handling crisis situations and ďŹ nally they enjoy together the traditional World CML Day Cake! The meeting closed with a tango and salsa show. Asopaleu raised awareness with a digital screen on public roads for 20 days , through social media channels as well as through the TV channel.
PERU
From Peru, Luz de Esperanza association participated in #WCMLDay17 #TodayTogether sharing messages and images in social media channels.
MIDDLE EAST AND AFRICA 8 CML MEMBER ORGANISATIONS
Egypt: Power of CML Iraq: Leukemia Patients Care Association Israel: Israeli CML patients support and info organization Kenya: HENZO Morocco: AMAL Nigeria: Maxcare Nigeria South Africa: CML SA Zimbabwe: CML ZIMBABWE
EGYPT
Power of CML from Egypt held the annual observance of the world day of awareness disease #WCMLDay17 #TodayTogether on Saturday, September 23 at Cairo sharing the live event on Facebook.
IRAK
The Leukemia Patients Care Association of Irak was participating with #TodayTogether and #WCMLDay17 helding educational workshops for patients with the participation of several hematologists and dermatologists.
ISRAEL
Israeli CML patients support and info organization celebrated the #WCMLDay17 over a long weekend and were #TodayTogether with 120 of their members and their partners. The annual 3-day conference was led by expert speakers on CML and lectures from top haematologists.
KENYA
Henzo Kenya 2017 World CML Day was an event that was well attended by 160 patients 160, 4 physicians, 5 nurses and 7 caregivers at the Nairobi Hospital. The main agenda was to join the rest of the world in marking this very important day for CML patients around the world. The second agenda was to recognize the good work our CML healthcare professionals do in Kenya. They took this opportunity to present a chocolate cake with our logo and that one of WCMLDay2017 to the physicians and nurses just to appreciate them for the good work they do. They cut this cake and had so much song and dance. Thirdly they had a great session with the patients and caregivers, a town session/open forum where patients where free to ask questions relating to CML.
MOROCCO
AMAL from Morocco was developing many activities celebrating #WCMLDay17 #TodayTogether: the interview in the National Radio with the president of AMAL; other interview in Aswat Radio with AMAL and Dr Asmaa QUESSAR in Casablanca; a press conference hosted in Casablanca city with patient testimonials about access issues and other hot topics for CML patients as treatment's access to the second TKI, monitoring, bureaucracy, late diagnosis or psychological support. Also, they participated in another radio interview in Marrakech some days after the 9/22.
NIGERIA
Max Care Nigeria #WCMLDay17 #TodayTogether celebration was held at the GIPAP centre where all patients come to receive their treatment. They held a sensitization and awareness workshop discussing various issues centred around the disease CML, the importance of monitoring and particularly the need for strict adherence to drugs in order to avoid becoming resistant to GLIVEC which for now is the only treatment received free of charge in Nigeria. Participants included patients, caregivers, doctors, nurses and some health practitioners were over 100 people in attendance.
SOUTH AFRICA
CML SA from South Africa celebrated #WCMLDay17 #TodayTogether with different activities as a “Dance for CML” and a workshop with nurses contributing #CML patients wellbeing pointing out that we are celebrating with thousands across the world as we have access to treatment and care. But we also highlight the plight of thousands more who do not have the access to diagnostics, treatment and monitoring.
ZIMBABWE
CML Zimbabwe Trust was celebrating #WCMLDay17 #TodayTogether with its representatives, Anesu Katsande, Onward Mudindo and Graham MacLeod and other members handed over some token of appreciation to 9 selected physicians and haematologists to thank them for their job as they observe the orld CML Day. The presentation was done at Radiotherapy Centre, Parirenyatwa Hospital, Harare. The group also distributed more than 100 posters for World CML Day to public places and clinics and shared their cake with medical practitioners and in the city of Bulawayo they had almost a similar event were Deputy Chairperson, Loretta Williams handed tokens to 2 doctors based in Bulawayo the second capital city sharing CML and medication information to the public and distributing the posters as well.
CENTRAL AND EASTERN EUROPE & WEST ASIA 17 CML MEMBER ORGANISATIONS Armenia: “CML-Armenia” Czech Republic: Diagnoza CML Estonia: Eesti Leukeemia ja Lümfoomihaigete Liit (Estonian Leukaemia and Lymphoma Patients Society) Hungary: CML-GIST Betegek Egyesülete, MOHA Kosovo: Kosovo Association for Supporting Chronic Leukemia Patients Lithuania: Community of Oncohematological Patients (COHP) KRAUJAS Macedonia: Association for help in treatment of patients with CML Poland: The Nationwide Association for CML Patients Aid Romania: Romania: ”MIELOPRO" - Asociatia Pacientilor cu Neoplazii Mieloproliferative Russia: CML-Stop, Sodeystvie (Assistance) Serbia: CML Association of Serbia Slovakia: CML Life Slovenia: Slovenian Lymphoma and Leukemia Patient Association, L&L Turkey: The Leukemia, Lymphoma, Myeloma Patients Research and Education Society (LLMBIR) Ukraine: CFР «DROP BLOOD»
ARMENIA
On 22.09.2017 an event dedicated to the #WCMLDay17 #TodayTogether was organized in the Hematology Centre. The deputy director of the Hematology centre N. A. Melkikyan welcomed the guests, thanked the organizer of the event, Dr Aline Aywaz, the head of Molecular Biology and Immunophenotyping department. Doctors touched upon in detail the epidemiology of CML, clinical presentations, application of newest diagnostic methods, treatment, and eectiveness of the medicinal products used during treatment. Organizers prepared brochures on modern diagnostic methods of CML, doctors answered all the questions of the audience and hospitality was organized for the guests.
CZECH REPUBLIC
Diagnoza CML from Czech Republic commemorated the #WCMLDay17 #TodayTogether by publishing a video: the aim is to allow not only a small patient group visiting the laboratory but the whole Czech speaking CML patient community viewing the methodology of laboratory monitoring of CML patients. The video was published on 9/22 on their website and Facebook.
ESTONIA
Eesti Leukeemia ja LĂźmfoomihaigete Liit (the Estonian Leukaemia and Lymphoma Patients Society) from Estonia, participated in #WCMLDay17 #TodayTogether by sharing online information about the campaign and the 9/22 CML awareness day.
HUNGARY The CML-GIST Betegek Egyesülete association from Hungary held the 5th ”együtt lét nap” in Ádám Villa, Budapest. The program was opened by Éva Szentesi writer and anti-cancer activist with her own disease story. The lecture was followed by an unusual roundtable discussion about the generics with the participation of Dr Elvira Altai and Dr Zita Borbényi haematologists. The conversation was moderated by Dr Szabolcs Modok haematologist. After the association general meeting at the afternoon, guests participated in lectures and foreign activities presentations. The activities were shared in social media channels. The Foundation for Hungarian Oncohaematological Patients (MOHA) organized a Medical-Patient Meeting on the occasion of the #WCMLDay17 #TodayTogether. They have also shared the campaign in social media.
KOSOVO The Kosovo Association for Supporting Chronic Leukemia Patients took to the hills with hiking on #WCMLDay17 with the motto "Today, Together". In addition to these Posters were displayed throughout health care centres and meeting of patients representatives with Health Deputy Minister was held to raise awareness on the importance of the regular supply of CML patients with treatment.
LITHUANIA The Community of Oncohematological Patients (COHP) KRAUJAS from Lithuania was participating in #WCMLDay17 #TodayTogether campaign sharing online information on its website, media and raising awareness in several newspapers.
MACEDONIA In Macedonia, the Association for help in treatment of patients with CML led by the president Pepo Levi took to one of the main spots in the Skopje city centre where they were handing out leaets and raising further awareness of the current situation. The acting Minister of Health together with the Director of the Agency of Medicines have made the promise on national television that patients will ďŹ nally receive 2nd line treatment. #WCMLDay17 #TodayTogether
POLAND The Nationwide Association for CML Patients Aid celebrated World CL Day 2017 with the Polish CML patients discussing in the local groups the current problems of the treatment of this disease in Poland, according to the motto: "Today, together we are treated. Tomorrow we need cure!� They were sending #TodayTogether the best wishes and very kind regards to all friends from all over the world.
ROMANIA The Association of Patients with Myeloproliferative Neoplasia "MIELOPRO" from ROMANIA rallied to the actions initiated worldwide to celebrate the #WCMLDay17 #TodayTogether on September 22 through: Creating and distributing newsletters about CML, the signiďŹ cance of September 22, about the problems that some other patients are experiencing and the need to join forces to ensure an equal chance for life for all patients; marking the World CML Day through a special section within the Annual National Conference of the Association that took place during this period and additionally, sending press releases and providing interviews in written and audio-visual media.
RUSSIA The Russian organisation Sodeystvie (Assistance) held on #WMLDay17 #TodayTogether a school for CML patients in St. Petersburg at the Federal State Biotechnology University of Russia. The event was attended by about 60 patients, residents and doctors of the Federal State Biotechnology University RosNIIIGT. They were also sharing Cml information and activities in its website and social media channels. CML Stop organisation was also participating in the World CML Day 2017 sharing online information about CML patients and CML patient advocacy in dierent events.
SERBIA
From Serbia, the CML Association of Serbia was participating in #WCMLDay17 #TodayTogether sharing information about the campaign and the disease with CML patients.
SLOVAKIA
CML Life from Slovakia were participating in #WCMLDay17 #TodayTogether sharing the camping in social media as well as preparing a short information video: Premises and doctors clinics haematology and transfuziolรณgie university hospital bratislava there can't be missed.
SLOVENIA
In Slovenia, the Lymphoma and Leukemia Patient Association L&L actively promoted #WCMLDay17 #TodayTogether organising an event with the special name "FROM MELON TO PEPPER GRAIN" - the name reects huge advance in CML treatment with TKIs, that minimises the disease burden in the body of a CML patient, from the size of a melon down to the size of a tiny pepper grain. The event took place on Sept 21th in slovenian capital city Ljubljana with press conference, from where the main slovenian newspapers and internet news portals have reported. The speakers were renowned slovenian haematologists, all four doctors from University clinical center in Ljubljana, Slovenia. They presented CML disease, modern diagnostics and treatment. Two CML patients Tanja Fajon (Slovenian delegate in European Parliament) and Milena Remic (Vice President) presented their personal stories of successful CML treatment and life with the disease. Kristina Modic presented the activities of L&L Association for the CML patients in Slovenia. The presentation was also marked with the slogan of WCMLD 9/22: "Today, together we are treated. Tomorrow we need a cure!�
TURKEY The Leukemia, Lymphoma, Myeloma Patients Research and Education Society (LLMBIR) form Turkey were celebrating #WCMLDay17 #TodayTogether helding a meeting on Ankara with CML patients and doctors, sharing CML information also in social media channels.
UKRAINE The CFP DROP BLOOD CML patient association from Ukraine were celebrating #WCMLDay17 #TodayTogether in the city of Kiev holding a School for CML Patients. The school was attended by activists and regional leaders BFP "KRABLI KROVY" from 17 regions of Ukraine. Lectures of Professor Klimenko SV, MD professor Djail I.S., candidate of biological sciences Dmitrenko IV, chairman of the Board of All-Ukrainian Network of PLWH Sherembey Dmitry, heads of the BFP "BLANK CROP": Zelensky I.A. (Director of the Fund), Golovan I.M. (Deputy Director of the Fund).