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About this cause:www.pmdfamilysupport.com
Our mission is simple and has remained the same for over 25 years... We strive to provide support for families whose child/children have been diagnosed with Pelizaeus-Merzbacher Disease. We do this by offering an internet support group as well as hosting an annual family support conference for these families. At this conference they meet with doctors and therapist who have experience caring for individuals diagnosed with PMD in a family friendly setting. They also have the opportunity to hear about the latest research and developments in the study of PMD. Families travel from all across the USA, and some even come from other countries to attend. We foster awareness of this rare disease by holding fund raising events and providing literature about it. We encourage research that focuses on early and accurate diagnoses and improved quality of life for affected individuals.