Anémie de Blackfan-Diamond
The AFMBD was set up in 1996. It brings together French, Swiss and Belgian patients and their families.
The missions of the association are first of all human, providing information, and a place for discussion and moral support. They are also educational, providing time away for children and young adults to help them to live as simply as possible, despite their disease. Finally, they concentrate on medical and research matters, both to help advance research and to inform families of the latest news on the disease.
Anémie de Fanconi
The AFMF was set up 1990 by families concerned, and has the following objectives:
The AFMF has a Scientific Board which helps it to allocate funds gathered for research.
It is a member of the Rare Disease Alliance and of Eurordis.
It helps to update information on this pathology via the website of Orphanet.
The AFMF launched its first call for projects in 2014 with total funds of €150,000 over 3 years for all clinical, pre-clinical or fundamental research to provide better treatment for patients suffering from this affection and/or to improve knowledge of the disease and its repercussions.
Following this call, the AFMF received several applications which were evaluated by external experts and by the scientific board. Only 2 projects were selected and funded by the AFMF.
The AFMF intends to launch another call for projects in 2016.
HPN France – Aplasie médullaire est une association loi 1901, créée en 2004 par des patients, leurs familles et des professionnels de santé.
Composée uniquement de bénévoles, notre association est dédiée à l’hémoglobinurie paroxystique nocturne et à l’aplasie médullaire.
Nous travaillons tous ensemble autour de 5 grandes missions:
An association for patients and their families…
Its aim is to provide families with a place where they can chat and share, where everyone can express their thoughts and feelings and get the help they need.
O’CYTO provides patients with practical information that is useful in everyday life.
Working closely with doctors…
Its mission is to foster understanding of the disease and promote medical research.
The association provides financial support for clinical and therapeutic studies.
patients and their families, both psychologically and financially.
INFORMING & IMROVING
the diagnostic process, care and treatments.
The association provides patient with a wide range of information documents written in plain language by our scientific board.
DIP patients in dealing with public bodies.
In 2014, IRIS lobbied for the law to enable days of work to be donated to parents of seriously ill children. The association is currently lobbying alongside CEREDIH for neonatal testing for severe combined immunodeficiency (SCID).
L’Association Histiocytose France a été créée en 1999 (loi 1901, d’intérêt général).
-apporter un soutien moral aux familles et aux malades
-rassembler et diffuser des informations
-proposer des rencontres familles/médecins
-oeuvrer pour une meilleure prise en compte de la maladie à tous les niveaux
-soutenir financièrement la recherche sur l’histiocytose.
The ADAMTS 13 association was created with the aim of:
– providing moral support for patients suffering microangiopathy and for their families;
– helping to distribute information to the public, the entire medical profession and the health and social welfare authorities, to improve care for patients suffering from microangiopathy (HUS, ITP etc.) and to increase awareness of these pathologies.
– contributing to the advancement of medical research;
– bringing together adult and child patients so they can talk to each other.