For Patients & Families

Connect with Other Patients and Families

Leukodystrophy resources for patients & families

Organization Purpose Website Location
ALD-AMN Global Alliance Advocacy, research, and family support www.ald-amnglobalalliance.org International
European Leukodystrophy Association (ELA) Advocacy, research, and family support www.ela-asso.com/en Primarily Europe
United Leukodystrophy Foundation (ULF) Advocacy, research, and family support www.ulf.org Primarily USA
The Leukodystrophy Alliance Advocacy, research, and family support www.leukodystrophyalliance.org International
Fondation sur les Leucodystrophies Advocacy, research, and family support www.leucofondation.com Primarily Canada

Clinical consortiums for patients & families affected by other leukodystrophies

Organization Purpose Patients Website Location
Global Leukodystrophy
Alliance (GLIA)
To advance care, research, and clinical trials for leukodystrophies All leukodystrophy patients www.glianetwork.org Multi-site international clinical care and research consortium
LeukoTreat To promote development of therapeutic strategies for the most common leukodystrophies A subset of leukodystrophies www.leukotreat.eu Multi-site European consortium
Leukonet To advance care, research, and clinical trials for leukodystrophy patients in Germany All leukodystrophy patients www.leukonet.de Multi-site German consortium

Rare Disease Patient Organizations

Organization Purpose Website Location
National Organization for Rare Diseases (NORD) The National Organization for Rare Disorders (NORD) is a non-profit federation of voluntary health organizations dedicated to helping people with rare or orphan diseases. NORD is committed to identifying, treating and curing rare disorders through education, advocacy, research and service. http://www.rarediseases.org/ United States
Eurodis EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 606 rare disease patient organisations in 56 countries.
We are the voice of 30 million people affected by rare diseases throughout Europe.
http://www.eurordis.org/ Europe
Global Genes: RARE Project The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope � the Blue Denim Genes Ribbon�. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations. https://globalgenes.org United States
Canadian Organization for Rare Diseases (CORD) CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. http://www.raredisorders.ca/ Canada