Juin 2, 2008
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 “French Dyskeratosis Congenita Study”
The costs of this study, which will met by the French Dyskeratosis Congenita Society, is estimated at 40 000 Euros. The start of the study is scheduled for October 1^st , 2008. The expected results will offer ways of improving both life expectancy of patients and quality of life of patients and their families.