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Harvard Neuromuscular Disease Project (HNDP)
Muscular Dystrophy Association (MDA)
Autism Speaks
Genetic Alliance


Some families have told us how challenging it was to absorb and process all the information they received during the initial diagnosis of their child. Individuals that were diagnosed during adulthood have also commented about how hard it has been to adjust to the news. Other families have contacted us asking about clinics, support groups, meetings, and programs.

As part of their follow up services, the Muscular Dystrophy Association (MDA) has healthcare service coordinators, professionals who are trained to provide information and support to families with neuromuscular disease. Healthcare Service Coordinators are ready to assist families during their visit to the MDA clinic, helping to obtain equipment and services, providing information about activities, meetings and programs, as well as giving referrals to other services. You can locate the Healthcare Service Coordinators in your area by visiting the MDA website.

In the Greater Boston area, there are two MDA offices. Although these offices are located in the Greater Boston area, their representatives can put you in contact with the MDA office in your area.

Muscular Dystrophy Association
31 Milk St., Ste. 11
Boston MA 02109
Telephone: 617-348-2155
Fax: 617-368-9115

Muscular Dystrophy Association
275 Turnpike Street #201
Canton, MA 02021
Telephone: (781) 575-1887, (800) 730-0318
Fax: (781) 575-1886

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