The International 22q11.2 Foundation is a nonprofit organization dedicated to supporting the needs of families and individuals affected by chromosome… More The International 22q11.2 Foundation
Resource Categories: Genetic Disorder Organizations
The 22q and You Center
The 22q and You Center at Children’s Hospital of Philadelphia is an internationally recognized leader in the diagnosis and treatment… More The 22q and You Center
FSHD Society
Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic disorder that leads to the weakening of skeletal muscles. Typically beginning in… More FSHD Society
Parent Project Muscular Dystrophy
A nonprofit organization focusing on Duchenne muscular dystrophy. PPMD funds research, raises awareness, promotes advocacy, connects the community, and broadens… More Parent Project Muscular Dystrophy
Moebius Syndrome Foundation
The Moebius Syndrome Foundation’s mission is to provide information and support to individuals with Moebius syndrome and their families, promote… More Moebius Syndrome Foundation
NH Rare Disorders Association
The NH Rare Disorders Association is a 501(c)(3) nonprofit organization working to ensure high quality medical care and a high… More NH Rare Disorders Association
CLOVES Syndrome Community
CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome. The CLOVES Syndrome Community… More CLOVES Syndrome Community
Neurofibromatosis (NF) The Littlest Tumor Foundation
This genetic disorder has three forms: NF1, NF2, and Schwannomatosis. NF1 affects 1 in 3,000 births and causes tumors to… More Neurofibromatosis (NF) The Littlest Tumor Foundation
Rare New England
Rare New England’s mission is to bring together New England patients, families and providers touched by rare and complex disorders.… More Rare New England
Cornelia de Lange Syndrome (CdLS) Foundation
The CdLS Foundation provides a host of services that educate and unite families touched by this little-known genetic syndrome.