4H Leukodystrophy Resources
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.
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.
Hunter's Hope Foundation
Hunter's Hope Foundation is a non-profit organization committed to giving hope through education and awareness, research, and family care for leukodystrophies.
Leukodystrophy Family Forum
Find answers to frequently asked questions and common issues shared by the leukodystrophy community. Access disease and research information and links to support resources.
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.
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.
The M.O.R.G.A.N Project
The M.O.R.G.A.N. Project is a national, community-based organization of volunteers dedicated to promoting awareness and facilitating support of parents caring for their children/young adults with special healthcare needs.
The Yaya Foundation for 4H Leukodystrophy
The Yaya Foundation focuses on finding a cure for 4H leukodystrophy by supporting research, raising awareness, improving education and connecting families.
United Leukodystrophy Foundation (ULF)
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.
United MSD Foundation
Provides information about multiple sulfatase deficiency (MSD), patient resources, events, family stories, research information and more.
Advancing Care for Children with White Matter Disease: Leukodystrophy Center
Watch the video to learn how Children’s Hospital of Philadelphia’s Leukodystrophy Center is using research to advance clinical care for white matter diseases.
H-ABC Family Conference 2018
This video includes interviews with families of children diagnosed with TUBB4A-related leukodystrophies, including Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum (H-ABC), along with highlights from the 2018 H-ABC Family Conference.
National Institute of Neurological Disorders and Stroke (NINDS)
The mission of the National Institute of Neurological Disorders and Stroke (NINDS) is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.