One of the founding principles of the ULF is to support those who are affected by leukodystrophy. While the United Leukodystrophy Foundation supports all types of leukodystrophy, some families may benefit from leukodystrophy specific information. We believe finding a cure is the answer, working together is the first step.
These foundations are not directly affiliated with the United Leukodystrophy Foundation.
4H/POLR3-Related Leukodystrophy
ADLD
Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP, formerly HDLS)
AGS: Aicardi-Goutieres Syndrome
- Aicardi-Goutieres Syndrome Americas Association (AGSAA)
- International Aicardi-Goutieres Syndrome Association
ALD/X-ALD/AMN: Adrenoleukodystrophy/Adrenomyeloneuropathy
- ALD Alliance (formerly Aidan Seeger Foundation)
- ALD Connect
- ALDInfo
- Arrivederci ALD
- Stop ALD
- Welkom bij de BELANGENVERENIGING ALD (Dutch)
- Navigating ALD (bluebird bio)
- ALD Newborn Screening Toolkit (bluebird bio)
AxD: Alexanders Disease
CADASIL: Cerebral Arteriopathy with Subcortical Infarcts and Leukoencephalopathy
Canavan Disease
- Canavan Foundation
- Canavan Research Foundation
- Canavan Research Illinois
- National Tay-Sachs & Allied Diseases Association
CTX: Cerebrotendinous xanthomatosis
- Unlock CTX – Patient Focused Drug Development (PFDD) meeting
- CTX Alliance
- National Organization for Rare Diseases (NORD) CTX Patient Assistance Program
GM1 Gangliosidosis
H-ABC: Hypomyelination with Atrophy of Basal ganglia and Cerebellum
HBSL: Hypomyelination with Brain Stem and Spinal Cord Involvement and Leg Spasticity
- Mission Massimo Foundation
- Yasho’s Leukodystrophy Foundation (Netherlands)
Krabbe Disease
- Caring 4 Krabbe Kids
- Fondation de tout pour Loo (Canada)
- Krabbe Connect
- Partners for Krabbe Research
- Rosenau Foundation (formerly Legacy of Angels Foundation)
LBSL: Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation
Leukoencephalopathy related ARS/ARS2 disorders
Leukoencephalopathy with Calcification and Cysts
MLC: Megalencephalic Leukoencephalopathy with subcortical Cysts
MLD: Metachromatic Leukodystrophy
- Bethany’s Hope Foundation
- Calliope Joy Foundation
- Cure MLD
- Evanosky Foundation
- MLD Foundation
- MLD Support Association UK
- Orchard Therapeutics
- Orchard Therapeutics – Family Stories
- Orchard Therapeutics – Gene Therapy
MSD: Multiple Sulfatase Deficiency
PMD: Pelizaeus-Merzbacher Disease
Refsum Disease
SLS: Sjogren-Larsson Syndrome
Tay-Sachs Disease
CACH: Vanishing White Matter Disease
ZSD: Zellweger Spectrum
Other Broad Leukodystrophy Foundations and Resources:
- Alex, The Leukodystrophy Charity (Alex TLC) (UK)
- Australian Leukodystrophy Clinical and Research Program
- Believing in Bryleigh Foundation
- Calliope Joy Foundation
- Center for Children with White Matter Disorders (Europe)
- Child Neurology Foundation
- Courageous Parents Network
- European Leukodystrophy Association
- Fédération des Maladies Orphelines (France)
- Fundación Lautaro te Necesita (Argentina)
- Global Genes
- Global Leukodystrophy Initiative Association (GLIA)
- Hunter’s Hope
- LeukoLabs
- Leukodystrophy Australia
- Leukodystrophy Family Forum
- Leukodystrophy Foundation (Canada)
- Leukodystrophy Newborn Screening Action Network (LDNBS)
- Leukodystrophy Resource & Research Organisation, Inc. (Australia)
- Mission Massimo Foundation
- National Organization of Rare Diseases (NORD)
- Pediatric Brain Foundation
- Remember the Girls
- United Leukodystrophy Foundation Leukodystrophy Support Group and Discussion Community
- VKS stofwisselingsziekten (Dutch)
Do you know of a disease specific resource that should be listed here? Please e-mail [email protected].