By including the links below, The Stop ALD Foundation does not necessarily endorse any of the organizations listed; nor do we vouch for the accuracy of the information contained on their respective web sites.
Sites that Discuss Adrenoleukodystrophy
- ALD Connect
- The ALD Foundation
- ALD Life
- Leukodystrophy Family Forum
- The Myelin Project
- Oliver's Army
- Orpha.Net -- European Rare Diseases Organization and Their Discussion on ALD and many great links & resources
- The United Leukodystrophy Foundation
- US ClinTrial.gov -- Listing of ongoing US ALD clinical trials
- WikiPedia on ALD
- X-Linked ALD Database
For Physicians, Scientists & Healthcare Workers
Stem Cell (Cord Blood / Bone Marrow) Transplants Resources
- The Blood and Marrow Transplant Information Network
- Bone Marrow Donors Worldwide
- Duke University's Pediatric Stem Cell Transplant Program
- National Marrow Donor Program
- University of Minnesota: Fairview University
- The Cord Blood Banking Center - A service to help expecting mothers donate their cord blood or bank for their own purposes.
- Related Donor Cord Blood Program. For families impacted by a life-threatening disease where a cord blood transplant could be a cure, the cord blood from a new family baby can be collected and stored at no cost to the family and then may be used to treat an affected biological sibling or parent who has a diagnosed disease.
Leading Research Organizations
- Cochin Institute of Molecular Genetics (France)
- Kennedy-Krieger Institute
- The X-ALD Group at the Academic Medical Center (AMC)
- RARE Toolkits. RARE Toolkits provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients.