About Us
The European Federation of Associations for Patients with Haemochromatosis (EFAPH) is a non-profit organisation dedicated to raising awareness about haemochromatosis in Europe.
The Federation was founded by Jean Rialland and Professor Pierre Brissot (MD, PhD) in Rennes, France, in August 2005.
The French, Belgian and Spanish Haemochromatosis Associations were the founding members and, since then, our alliance has grown to include other European haemochromatosis associations.
Our priorities
Supporting Member Associations
-
Ongoing support for newly federated member associations
-
Enhanced communication efforts to engage and attract new members across Europe
Raising awareness among healthcare professionals
-
Extension of a Pilot Project conducted in France (2012) to the rest of the country and then to other European countries
-
Scientific surveys with strong patient involvement for improved identification of early symptoms (GPs awareness for early diagnosis)
Promoting blood donation by HH patients in Europe
-
Inventory of national legislations and practices
-
Preparation of joint national campaigns with shared tools (flyers, kits, therapeutical follow-up note books, posters)
-
Lobbying national and European Authorities to standardise regulations
Improving patients’ quality of life
-
Participation of member associations in clinical trials (HH-Arthropathy and new medicines) and surveys
-
Promotion of “social network” type communication between patients, health professionals and NGOs.
Taking part in setting up the European Reference Network (ERN)
Our mission is to provide support, education, and advocacy for individuals affected by this condition, as well as their families and healthcare providers. Through our collaborative network of patient associations, medical professionals, and researchers, we strive to improve the quality of life for those impacted by haemochromatosis.
We believe in empowering patients with knowledge and resources to actively manage their health. Collaboration is key to driving positive change, and we actively seek partnerships with patient associations, medical experts, and relevant stakeholders across Europe.
As an organisation, we are committed to sharing reliable information, promoting early detection, and advancing research efforts to better understand and manage haemochromatosis. We welcome your involvement and support in our initiatives to enhance public knowledge, facilitate access to care, and ultimately reduce the burden of haemochromatosis across Europe.