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Ataxia in France
There are about 1,500 people who have been diagnosed with Friedreich's ataxia in France, a rare disease which often begins in the teens but can also start in childhood or as an adult.
AFAF, Association Française de l'Ataxie de Friedreich, a non-profit and non-governmental organisation, was created in 1960 by Clementine Oddos and Bernard Verne, both affected with Friedreich Ataxia. Bernard is still a member of the board.
Based on records from 2020, AFAF has 981 members, 500 of whom are affected with FA.
AFAF is run by a “Conseil d'Administration”, a board composed of 18 voluntary members who meet three times a year for a whole weekend.
The Conseil d’Administration is assisted by a Medical and a Paramedical Council as well as a Scientific Council. The Medical and a Paramedical Council is composed of clinicians, physicians, medical practitioners, physiotherapists...etc who are all specialists in the fields related to the disease.
The Scientific Council is composed of 11 scientific researchers and 9 consulting members who evaluate the applications for funding.
Support and boost basic science and clinical research by raising money and allocating the money to various projects after a selection by the Scientific Council. Additionally, we also assist researchers in finding participants for clinical trials.
Fundraising: we don’t receive any public money and all our funds come from our members or from donations. Our members organise all kinds of different activities to raise money for FA research.
Improving quality of life: we provide information on Friedreich’s ataxia to our members and to all of the health professionals who take care of them.
We issue leaflets on specific topics written by members of our medical and paramedical board. They are then sent to a variety of healthcare professionals who are involved with our members.
We have also written information packs which can be useful for helping people on a day-to-day basis and for a better understanding of the disease. They are sent to all our members and regularly kept up-to-date.
We also support Ataxia Expert Centres which provide multidisciplinary care to ataxic patients.
Assisting patients and their families
We have two helplines, one dedicated to helping people to cope mentally with their illness and one dedicated to people with FA as well as their families, aiming to help particularly with everyday problems associated with the disorder.
Four times a year we publish a 40-pages newsletter called Espoir and once a year in the spring we organize a 2 day national gathering for our members. Several regional meetings are also organized all over France.
During these annual or regional meetings, we give our members the opportunity to get acquainted with researchers, clinicians and healthcare professionals (as well as physiologists and social workers) to share good practice and allow people with ataxia to learn new things about their disorder.
Provide all kinds of information to our members on research in France and around the world, from basic research to clinical trials on everything from physiotherapy, cardiology and rehabilitation.
Promote cooperation with other organisations - As well as being members of Euro-ataxia, we are also active members in other networks of rare disease organisations in France and internationally. For example, Alliance des Maladies Rares (AMR), Association Française des Myopathies (AFM), Association des Paralysés de France (APF) Orphanet and Eurordis.
AFAF works in close partnership with other organisations for similar rare ataxias: CSC (Connaître les Syndromes Cérébelleux) and ASL (Association Strumpel-Lorrain). We also have close contacts with the US-based Friedreich’s ataxia organisation FARA.
Allocation of grants to research teams:
- Average annual amount allocated to grants: around €100,000
- We give grants of up to €25,000 a year per research team in fields related to all the basic aspects of Friedreich Ataxia (genetics, biochemistry, neurobiology…) either in human or animal models, or in clinical research.
These calls are open to either French, or associated foreign research groups.
We are very proud of our recently refurbished website, www.afaf.asso.fr which is open to everyone and includes discussion groups and links to our Facebook page.
We currently provide two hotlines for psychological and day to day problems and questions for people with ataxia and their families
Check out AFAF's latest newsletter...