Donate Now!
Just Diagnosed? Start Here!
 
  For Patients
& Families
For Patients & Families
A guide for newly diagnosed patients & families
Educational Videos
Doctor-Patient Webinar Series
Find an ALD/AMN specialist
Connect with other patients & families
Take action!
Register for ALD Connect updates
Do you have suggestions, feedback, or
questions about ALD Connect?


Email us at: info@aldconnect.org
 

Other Resources


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
Korean Society of ALD Advocacy, research, and
family support 

www.ald.or.kr  
South Korea





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
 

For Patients & Families
A guide for newly diagnosed patients & families
Learn More about ALD?
ALD Educational Seminars
Find an ALD/AMN specialist
Connect with other patients & families
Take action!
Register for ALD Connect updates
For Researchers
Review the standard of care for ALD
Membership & Site listing
ALD News & Events
Sample sharing & access
Clinical Trial Database
Post a Clinical Trial
Trials
Browse Recruiting Trials
Clinical Trial News
Clinical Trials 101

Get Involved
Learn about ALD
Raise Awareness
Help find a cure
Build a sense of community
Attend the ALD Connect Annual Mtg
About Us
Our Mission
Our Structure
Our Sponsors & Finances
Our Research
ALD SPECIALIST
Contact Us
Connect with us: Donate Now!       Help       Sitemap       Contact Us