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- Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find a Disease Specialist fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.
Specialty Clinics/Treatment Centers
- The Muscular Dystrophy Association can help you find a doctor who knows about muscular dystrophy. Click on the link to search for specialty clinics nearest you.
- The Muscular Dystrophy Association's local network of chapters and field offices provide services to enhance mobility and independent living.
- The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.
- The Muscular Dystrophy Association has a live chat for patients with Limb-girdle muscular dystrophy (LGMD), which is a type of Dysferlinopathy. Click on the link to view the MDA's calendar which lists the days and times for upcomming LGMD chats.
Healthcare Professional Online Directory
- The Jain Foundation provides a list of doctors who are knowledgeable about diagnosing dysferlinopathy.