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8 & 9 May 2009, Eugenides Foundation, Athens, Greece The launching session, entitled ‘No policy without patients’, will set the tone. This year’s Membership Meeting will provide participants with information and practical tools to influence public policy. The conference will set off with an explanation on how the new European legislation and upcoming National Plans for Rare Diseases can actually help improve patients’ quality of life. This will be followed by four workshops to empower patients through their involvement in on-line communities, registries for research, help lines and policy design.
Like every year, the Membership Meeting will also be the chance for people at the very heart of the rare disease community to network and debate about the issues which are important to them and their specific disease. This will also be the time for EURORDIS members to capitalise on last year’s achievements and plan the way forward at the General Assembly. “Last year, 2008, was a very successful year for rare disease policy and in light of the adoption of the European Commission Communication on Rare Diseases, the proposal of the Council Recommendation and the renewal of the French National Plan for Rare Diseases, 2009 promises to be just as exciting a year,” argues EURORDIS Chief Executive Officer Yann Le Cam. EURORDIS Membership Meeting will capitalise on this and focus on the challenges ahead: the need to make rare diseases a public health priority and the need for National Plans for Rare Diseases in every country in Europe.”
The event organisers are expecting at least 200 participants, from Europe and further a field, to gather at the Eugenides Foundation in Athens. The two day event includes a busy and varied programme. Greece’s First Lady, Ms Papoulia, will officially open the meeting, and Terkel Andersen, President of EURORDIS, will explain the meaning of patient empowerment and how to foster it. The first day will conclude with a roundtable debate entitled ’Sharing Experience on National Plans’. The second day is made up of a series of workshops. Four practical, hands-on workshops will run in parallel, with an informal and open setting. - Workshop I: ‘Online Communities’
- Workshop II: ‘Registries’
- Workshop III: ‘The Polka Project to better empower patients in policy’
- Workshop IV: ‘The European Network of Rare Disease Help Lines’
“The workshops are an excellent opportunity for participants to sit together, face to face, and really discuss the issues in detail,” said Anja Helm, Manager of Relations with Patient Organisations at EURORDIS. - The ‘Online Communities’ Workshop aims to show how online communities for rare disease patients represent a new horizon for patient peer support and research orientations. This workshop will showcase success stories from Europe and the U.S, provide an insight into the newest online research technologies, and outline how patients can participate. Elizabeth Vroom, from the Duchenne Parents Project in The Netherlands, will be showcasing the success story of the online Duchenne Community. EURORDIS will present its own new and updated online strategy.
- The ‘Registries’ Workshop explores the recurrent and vast topic of registries. “With this workshop we aim at discussing collaboration, ownership and involvement of patient organisations, building on previous work,” emphasizes Anja Helm.
- In the ‘Polka Project’ Workshop, patient representatives who need to negotiate with policy makers will be trained with a new method developed by the European Network of Science Centres and Museums: the Play Decide Sessions.
- In the ‘Network of Rare Disease Help Lines’ workshop, participants will be given the chance to find out how patient organisations can gain from joining the Network of European Help Lines.
“It would be really great if everyone actively participates and then walk away from the workshops with new and practical ideas to take home and hopefully put into use in their own countries,” Helm suggests. A series of satellite meetings have also been organised on the sidelines of the event. These include the Meeting of the Council of National Alliances and the first Meeting of the Council of European Rare Disease Federations. After the conference participants will be able to relax, sightsee and discover the cradle of Western-civilisation, with an organised visit to the Acropolis and the new Acropolis Museum. This is an event not to be missed: save the date!
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2009-03-14 
English 
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