Aicardi-Goutières Syndrome Association Americas (AGSAA)
AGSAA provides information about Aicardi-Goutières syndrome, resources for families and physicians, support groups, research information and more.
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Leukodystrophy Center Resources
Our Leukodystrophy Center experts have created this list of resources to help you keep your child safe and well.
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ALD Connect
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
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
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.
Cure GM1 Foundation
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.
European Leukodystrophy Association
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.
Foundation to Fight H-ABC
Provides information about H-ABC to spread awareness about this degenerative disease, and raises funds for research on gene therapy treatments that could stop the degenerative effects of H-ABC.
Gavin Flying for a Cure
Gavin Flying For A Cure was created to honor Gavin Quimby (Super Gav) and to bring awareness to metachromatic leukodystrophy (MLD). Read Gavin's story and find out how you can get involved.
Global Leukodystrophy Initiative Consortium (GLIA)
Children’s Hospital of Philadelphia (CHOP) is leading an initiative to establish a multi-institutional program to advance research and treatment across the leukodystrophies.
Leukodystrophy Center Welcome Guide
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.