RARE MEDICAL AND GENETIC CONDITIONS



National Organization for Albanism and Hypopigmentation (NOAH)
Prader-Willi Research
American Sickle Cell Anemia Association
Archives of Disease in Childhood
Hermansky-Pudlak Syndrome Network
Stevens Johnson Syndrome Foundation
Barth Syndrome Foundation
Huntington Disease Society of America
Von-Hippel-Lindau (VHL) Alliance
Children's Craniofacial Association

Xeroderma Pigmentosum Society
Chromosome 18 Registry & Research Society
International Clearinghouse for Birth Defects

Cooley's Anemia
Internet Low Vision Society

Cushing Syndrome
Osteogenesis Imperfecta Foundation

Developmental Delay Resources
Lowe Syndrome Association

Ehlers-Danlos Society
Marfan Syndrome Foundation

Fibromyalgia
Noonan Syndrome Foundation

Freeman-Sheldon Syndrome
Progeria Research Foundation

Fragile X
PXE International




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Last updated on November 12, 2018