Chaque don ou versement effectué par un particulier au bénéfice de l’AFDC est déductible des impôts à hauteur de 66%, à hauteur de 20% du revenu net imposable du foyer fiscal.
The money given for the research are so inadequate that it has to be supported by private funds.
The FDC Society points out the importance of this investment .Only the research can let hope to understand the genetic pathology of DC and so give therapeutic answers for every patient....Read more....
FRENCH DYSKERATOSIS CONGENITA STUDY
Dyskeratosis congenita is a severe and rare inherited genetic disorder. It is estimated that about 100 persons are affected in France. This small number of affected individuals combined with the recent discovery of atypical variants of the disease explain why it remains little known to physicians and why optimal treatment protocols still need be defined.
This is why the French Dyskeratosis Congenita Society (AFDC), in collaboration with the Reference Centre for Acquired and Constitutional Bone Marrow Failure Syndromes (Saint-Louis and Robert Debré Hospitals, Paris, France) wish to undertake an epidemiological study of the disease entitled...
Fighting against a serious disease is part of a life and involves a lot of challenges to take up and difficult, tiring situations to live .
To help the patients and their families in their fight, The FDC Society , created in April 2007 is decided to make people know more about Dyskertosis Congenita and its atypical aspects and to support the basic and clinical research on this disease .
In fact, The FDC Society wishes to provide every medical and scientific information to the patients and their families about the disease and also to help the patient in the diagnosis of this disease and the medical and scientific basics.
