EFAPH Priorities

1. Extension of EFAPH’s support to new country members:
-Continued support to newly of federated member associations
-Elaboration and update of a roadmap for new members
-Extended communication so as to instigate new members in Europe

2. Extension of GPs’ awareness Pilot Project (Yvelines, France) to:
-French Brittany (Bretagne), Paris region (Ile de France), rest of France, and other countries in Europe
-Academical surveys strongly implying patients for better identification of early symptoms (GPs awareness for early diagnosis)

3. Promotion of blood donation by HH patients in Europe
-Inventory of national legislations and practices
-Preparation of national campaigns based on common communication tools (flyers, kits, therapeutical follow-up note books, posters)
-Lobbying towards national and European Authorities to harmonize regulations

4. Improvement of patients’ quality of life
-Participation of patients’ organizations to clinical trials (HH-Arthropathy and new medicines)
-Promotion of “social networks” type of communications between patients, health professionals and NGOs.

5. Taking part in the setting up of an European Reference Network (ERN)

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