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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.
These webinar videos from the Leukodystrophy Symposium provide up to date information on the best diagnostic and disease management practices, with an emphasis on how to provide patient and disease centered care during the COVID-19 health emergency.
The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
Researchers at Children's Hospital of Philadelphia are working to create a non-invasive device to measure brain oxygenation during CPR and critical care, with the goal to reduce brain injury and death.
AGSAA provides information about Aicardi-Goutières syndrome, resources for families and physicians, support groups, research information and more.
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.
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.
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.
The Yaya Foundation focuses on finding a cure for 4H leukodystrophy by supporting research, raising awareness, improving education and connecting families.