These are a collection of websites on Rare Medical and Genetic Conditions. Many of these conditions are unfamiliar to most people. Please message me through this website if you have other Rare Conditions and want me to add the link. I hope these resources are of assistance to you and your needs.
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- American Sickle Cell Anemia Association
- Archives of Disease in Childhood
- Barth Syndrome Foundation
- Children’s Craniofacial Association
- Chromosome 18 Registry & Research Society
- Cushing Syndrome
- Diabetes Resource Guide
- Ehlers-Danlos Society
- Fibromyalgia
- Foundation for Ichthyosis & Related Skin Types (FIRST)
- Fragile X
- Hermansky-Pudlak Syndrome Network
- Huntington Disease Society of America
- International Clearinghouse for Birth Defects
- Joubert Syndrome
- Lowe Syndrome Association
- Marfan Syndrome Foundation
- National Organization for Albinism and Hypopigmentation (NOAH)
- Noonan Syndrome Foundation
- Osteogenesis Imperfecta Foundation
- Parkinson’s Disease
- Prader-Willi Research
- Progeria Research Foundation
- PXE International
- Stevens-Johnson Syndrome Foundation
- Von-Hippel-Lindau (VHL) Alliance
- Xeroderma Pigmentosum Society
