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Patient associations

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:


  1. to offer families and patients access to information, support, and discussion meetings;
  2. to promote medical research on Fanconi anemia, both fundamental and clinical;
  3. more generally, to provide resources, and carry out actions to fight this disease.
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.
  • Aid, support and information initiatives for patients and their families.
  • Organisation of meetings and get-togethers for families and specialists.
  • Moral support with a telephone helpline hospital visits etc.
  • Regular newsletters.
  • Organisation of occasional events to raise funds.
  • Awareness raising events on donating blood and bone marrow.
  • Regular contact with specialists in Fanconi syndrome in France and abroad.
  • Effective cooperation with other Fanconi associations in the world.
  • Support for research: calls for projects.

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.



Aplasie médullaire/HPN



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:  


  1. aider à la recherche sur les maladies rares du sang en récoltant des fonds,

  2. informer les patients et leur famille sur leurs maladies et traitements,

  3. sensibiliser le grand public sur le don du sang, de plaquettes et de moelle osseuse,

  4. mettre en relation les patients et leur entourage par son forum de discussion, ses déjeuners et ses journées patients,

  5. réconforter et soutenir les patients et leur famille au quotidien.



Cytopénies auto-immunes



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.



Déficits immunitaires



I.R.I.S. is a national association that represents patients and their families suffering from primary immune deficiency.
Since 1998, IRIS has been pursuing these objectives: 

SUPPORTING
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.

REPRESENTING
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). 



Histiocytose Langerhansienne



L'Association Histiocytose France a été créée en 1999 (loi 1901, d'intérêt général).
Ses objectifs:
-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 
et
-soutenir financièrement la recherche sur l'histiocytose.



Microangiopathie thrombotique



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.

News

Testez vos connaissances médicales en répondant aux quizz cas cliniques MaRIH !
Créés par les experts membres de la filière
La Filière de Santé MaRIH encourage la mise en place de projets sur les Maladies Rares Immuno-Hématologiques
3 bourses à hauteur de 10 000 € chacune.
Deadline : 2 octobre à minuit.

Newsletter n°5 de la filière de santé maladies rares immuno-hématologiques
Avril 2017

Retrouvez l'actualité de la filière MaRIH et de ses membres dans notre Newsletter semestrielle

See all news

Schedule

From 22-06-2017 to 25-06-2017 : 22nd EHA congress, Madrid


30-06-2017 : Journée annuelle du centre de référence des cytopénies auto-immunes de l'enfant CEREVANCE, Paris
See the entire schedule