AGSAA provides information about Aicardi-Goutières syndrome, resources for families and physicians, support groups, research information and more.

The ALD Alliance exists to cure, support and advocate for ALD as well as to advocate for nationwide newborn screening.

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.

At ALD Connect, our mission is to improve the health outcomes of individuals affected by adrenoleukodystrophy (ALD). By empowering patients, raising awareness, and accelerating the translation of scientific breakthroughs into better clinical care, we aim to make a lasting impact on the ALD community. Together, we are committed to revolutionizing care and driving progress toward a cure.

The Canavan Foundation is a 501c3 not-for-profit organization dedicated to educating at-risk populations about Canavan disease and other genetic diseases and the reproductive options available to carrier couples. We encourage preconception genetic carrier screening whenever appropriate. In addition, the foundation supports research towards treatments and a cure for Canavan disease.

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.

Creating a support network for individuals, families, and friends affected by AxD.

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.