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Overview of the European patients’ organisations

Overview of the European patients’ organisations. NFFA 1994. Landscape of patients’ organisations. Albinism Fellowship 1978. DFFA 1996. NOAH 1993. Genespoir 1995. Albinit 2008. www.albinismo.eu 2007. ALBA 2005. A total of over 1500 “members”. NFFA 155 members.

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Overview of the European patients’ organisations

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  1. Overview of the European patients’ organisations

  2. NFFA 1994 Landscape of patients’ organisations Albinism Fellowship1978 DFFA 1996 NOAH 1993 Genespoir 1995 Albinit 2008 www.albinismo.eu 2007 ALBA 2005

  3. A total of over 1500 “members” NFFA 155 members Landscape of patients’ organisations Albinism Fellowship400 members DFFA 180 members NOAH 315 members Genespoir 303 members Albinit 63 members www.albinismo.eu ALBA 115 members

  4. Informing, assisting, supporting families: • Post-diagnosis support • Exchange of experience, social interaction, psychological support • Internet (website, forum, Facebook) • Meetings and gatherings • Challenges: value of membership, balance parents + children / grown-ups, retention of members, distance Key areas of activity

  5. Healthcare and medical world: • Information on assistance and benefits to members • Contacts with medical practitioners (specialised hospitals, “expert” centres, conferences) • Expectations: • Good practices for diagnosis (and announcement of diagnosis) • Concentration of expertise and knowledge • Challenge: how to engage with the medical world? Key areas of activity

  6. Research: • Contacts with researchers (Denmark, France, Italy, Spain, UK) • Funding of research projects (France) • Messages: • All organisations see research as vital • Need for community of patients to stand united and be visible to back the research community • Coordination of research community needed • Research agenda and prioritisation? • Need to communicate on research to members of our organisations Overview of missions

  7. Commonalities in the missions, challenges and expectations • Work on the following collaboration opportunities: • Exchange of experience (community building and “management”) • Data- and knowledge-sharing (e-infrastructure) • Humanitarian projects (?) • Consolidating knowledge and good practices on medical aspects • Research: • Visibility of the community of patients • Strong connection with research community • Support through fund-raising (“Horizon 2020” as a funding opportunity to target) Conclusions of yesterday’s meeting

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