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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.
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 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.
Find answers to frequently asked questions and common issues shared by the leukodystrophy community. Access disease and research information and links to support resources.
It aims to exponentially accelerate the discovery of novel genetic variations responsible for childhood leukodystrophies and to translate these findings into clinical treatments.
NTSAD is one of the oldest patient advocacy groups in the country, focused on funding research, providing support services to families and individuals worldwide, and raising awareness to prevent disease.
Resource Connects is a free website you can use to find community services and programs to support you, your child and family.
ULF is a non-profit, voluntary health organization dedicated to funding cutting-edge research and to providing patients and their families with disease information and medical referrals.