Overview of the european patients organisations
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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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Overview of the european patients organisations

Overview of the European patients’ organisations


Landscape of patients organisations

NFFA

1994

Landscape of patients’ organisations

Albinism Fellowship1978

DFFA

1996

NOAH

1993

Genespoir

1995

Albinit

2008

www.albinismo.eu

2007

ALBA

2005


Landscape of patients organisations1

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


Key areas of activity

  • 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


Key areas of activity1

  • 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


Overview of missions

  • 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


Conclusions of yesterday s meeting

  • 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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