National Initiative for Families with Duchenne (NIFD)
Center for Genetic Medicine Research
Children's National Medical Center
111 Michigan Avenue, NW
Washington , DC 20010
202-884-3813
800-343-5878
Duchenne muscular dystrophy (DMD) affects about 1 in 3500 boys of all races and ethnicities born in the US and around the world. DMD has the greatest annual per-person cost for outpatient rehabilitation treatment of all neuromuscular disorders. The combination of the disease's prevalence, seriousness, unpredictable occurrence, cross-cultural presentation and combined emotional and financial expense make DMD a significant public health concern. The National Initiative for Families with Duchenne (NIFD) is an effort to gather information about families of people with DMD from all over the USA. This survey asks about:
- the impact of having a child with DMD on the family;
- the needs of families for health services and their use of those services;
- the factors that may affect the quality of life of people with DMD and their families.
This project is the first large-scale needs assessment survey of the Duchenne muscular dystrophy community in the US. To get more information and to participate in the National Initiative for Families with Duchenne survey, call or study hotline at 800-343-5878 or:
- To find out more about the Family Survey, click here
- If you are a physician and would like your clinic to participate, click here
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