With its mission to improve health outcomes for patients with X-linked adrenoleukodystrophy, ALD Connect provides education and support information for families, research information, ways to get involved, and more.

Canavan Foundation is a not-for-profit organization dedicated to educating at-risk populations about Canavan disease and other Jewish genetic diseases and supporting research looking into a cure.

Chloe’s Fight Rare Disease Foundation is dedicated to supporting the development of cures and treatments for childhood lysosomal storage diseases (LSDs) by funding research, advocating policy for patients, and raising awareness.

The Foundation's mission is to fund research for the benefit of all those who suffer from GM1 gangliosidosis. Their website provides information about GM1, clinical trials, videos, patient stories, ways to get involved and more.

Provides assistance and support to families affected by leukodystrophy, funds research projects, raises public awareness, and collaborates with international organizations to pool resources to develop research.

Children’s Hospital of Philadelphia (CHOP) is leading an initiative to establish a multi-institutional program to advance research and treatment across the leukodystrophies.

We know how hard it is to care for a child with complex medical needs. We are here to support you and ease these difficulties any way we can. This guide was created as a resource for you and your family to navigate your care and partnership with our team at the Leukodystrophy Center.

It aims to exponentially accelerate the discovery of novel genetic variations responsible for childhood leukodystrophies and to translate these findings into clinical treatments.

The mission of the National Institute of Neurological Disorders and Stroke (NINDS) is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.

The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.