Health/Physical Illness: Genetic Disorders/Syndromes – Page 4

Mission MSA (Multiple System Atrophy)

Information on SDS and related disorders, coping strategies, and caregiving ideas. Includes a list of local support groups

Children’s Organ Transplant Association

COTA exists to assist patients who require a life-saving organ, bone marrow, cord blood or stem cell transplant. COTA works with any patient who needs a transplant due to a genetic disease such as Cystic Fibrosis or Sickle Cell Anemia, and all patients 21 and under for any disease complication. COTA guides the family and their

Dup15q Alliance

Provides family support and promotes awareness, research and targeted treatments for dup15q syndrome.

International Essential Tremor Foundation

Information and resources for people who face essential tremor, familial tremor, or hereditary tremor. Includes contact information for local support groups.

National Bleeding Disorders Foundation

Service to persons with hemophilia and their families. Promotes research, seeks to increase public awareness. Semi-annual newsletter, group development guidelines, and annual meeting for patients and professionals. Website has discussions groups/forums

Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS)

Parent-to-parent program offering support, advocacy, and education for families affected by Smith-Magenis Syndrome. Information and referrals, literature, phone support, and newsletter.

Tourette Association of America

Resources for those with Tourette Syndrome and Tic disorders and the general public, including information, news, webinars, referrals, educational resources, etc.

Chromosome 18 Registry and Research Society

Education for families, physicians, and the public about the disorders of chromosome 18. Encourages and conducts research into areas that impact families. Links families and their physicians to the research community. Newsletter and phone support.

Dystonia Medical Research Foundation

Education, support groups, fund raising for research, newsletter, information, referrals, and conferences.

International Rett Syndrome Foundation (IRSF)

For parents, interested professionals, and others concerned with Rett Syndrome. Information and referrals, peer support among parents, and research encouragement. Newsletter.