Spina Bifida Surgery During Pregnancy: Illustrations
See step-by-step illustrations of the stages involved in fetal repair of spina bifida.
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Aicardi-Goutières Syndrome Association Americas (AGSAA)
AGSAA provides information about Aicardi-Goutières syndrome, resources for families and physicians, support groups, research information and more.
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.
The Calliope Joy Foundation
Their fundraising efforts helped establish the nation's first Leukodystrophy Center of Excellence at CHOP. Learn about their cupcake challenge and how to get involved, and find information about current and upcoming clinical trials.
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.
Mission Massimo Foundation
It aims to exponentially accelerate the discovery of novel genetic variations responsible for childhood leukodystrophies and to translate these findings into clinical treatments.