THE FIRST PAN-EUROPEAN WORKSHOP ON THALASSAEMIA LISBON 26th ,NOVEMBER 2007
Introduction For 2007, the Thalassaemia International Federation has set as its primary goal to expand significantly its activities and strengthen its contribution in Europe. Amongst other activities and initiatives, TIF organized in this context the First pan-European Workshop on Thalassaemia on Lisbon in 26th of November 2007. This was held prior and in the context of nce on Rare Diseases (EURORDIS) entitled:“Patients and EU for promoting health for patients with Rare Diseases” Objectives of the Workshop: The primary objectice was to strengthen TIF’s support to thalassaemia patients across Europe. Increased prevalence of Haemoglobnopathies in Europe in the last decade resulted from increased migration of populations from highly affected countries of the developing world. It has become apparent that there is a great need for spreading awareness amongst the community and to educate patients/parents and health professionals in every European country, with regards to the nature of the disorders, their prevention and clinical managment. Even though health infrastructures and quality services with the excepting Eastern European countries are available and in place in all European countries, yet there is a clear need to improve awareness and set up in specialized services to patients with heredity haemoglobin disorders, who are heterogeneously spread, often in small population pockets, across most European countries, sometimes with religious, cultural and language difficulties in reaching them. TIF has established contacts from20 member states of the European Union, with 36 Health Professionals and 40 National Associations. Attending numbers surpassed all expectations reaching to 150 patients and doctors from 13 1
countries across Europe (Portugal, Poland, Romania, Cyprus, Greece, UK, Netherlands, Germany, Italy, UK, Spain, Bulgaria, Belgium). TIF fully sponsored their participation. Associations participate: 1. ALHETA (Spain) 2. ABMLT (Belgium) 3. Oscar Sandwell (UK) 4. UKTS (UK) 5. NEBATA (UK) 6. Antianemic Society of Ioannina (Greece) 7. Thalassaemia Association of Arta (Greece) 8. Thalassaemia Association of Thessaloniki (Greece) 9. PASPAMA (Greece) 10.Syllogos Pashonton apo Mesogiaki Anemia nomou Trikalon (Greece) 11.Greek Thalassaemia Federation (Greece) 12.Pancyprian Antianemic Association (Cyprus) 13.Asociatia persoanelor en Thalsemie major (Romania) 14.Thalasaemic’s organization in Bulgaria (Bulgaria) 15.S.A.M.e.v Deutschland-Seltene Anamien Deutschland eV (Germany)
Outcome: The First-pan European Workshop on Thalassaemia is considered very successful and has accomplished its main objectives and goals. Our future plan of action, 2008-2010 includes: •
Establishment and strengthen of Network of Collaboration
with EuropeanNTA’s and health professionals •
Translate
on
TIF’s
educational
material
in
European
languages •
Organization of Workshops locally and regionally
•
Collaboration and participation in Europe- NTAs activities
•
Collection and participation in EU Funded projects
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