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ALD resources
ALD resource directory
Thirteen places to learn, connect with other families, and explore adrenoleukodystrophy research and care.
We chose these for the different kinds of help they offer—from family support to medical information. This is a starting point, not a ranking. Some pages were published years ago, so check dates and discuss medical questions with your care team.
ALD organizations and family support
ALD Connect
ALD education, peer mentors, community programs and research information. Alison and Nic have served as peer mentors.
Cure ALD
Research fundraising focused on preventing or treating ALD symptoms.
Will to Cure ALD
Family-founded organization funding research across ALD centers.
Arrivederci ALD
Family-founded organization supporting ALD researchers and institutions.
ALD Alliance
Family support and advocacy, with resources on ALD and newborn screening.
Alex, The Leukodystrophy Charity
UK-based charity offering information and support across leukodystrophies, including ALD. Some services depend on location.
United Leukodystrophy Foundation
Leukodystrophy information, family support, medical referrals and research funding, including resources for ALD.
ALD information and screening
ALD.info and the ABCD1 Variant Registry
ALD information maintained by researchers and physicians, plus a registry of ABCD1 variants. Discuss registry information with a genetics specialist.
HRSA Newborn Screening: Results and Follow-Up
U.S. federal information about newborn screening results and follow-up.
Medical information and care
MedlinePlus Genetics
A U.S. National Library of Medicine overview of ALD and its inheritance. Its description of AMN says most affected people have adrenal insufficiency without specifying sex; the international ALD recommendations describe adrenal insufficiency as very rare in women.
International ALD care recommendations
Expert consensus on ALD diagnosis, monitoring and treatment. Discuss how the recommendations apply with an ALD specialist.
Kennedy Krieger Institute
The Moser Center’s multidisciplinary leukodystrophy care program.
GeneReviews: X-Linked ALD
A detailed clinical genetics reference, last updated in April 2023. Its summary and detailed discussion differ on adrenal risk in women. The international ALD recommendations describe adrenal insufficiency as very rare in women. Discuss individual concerns with an ALD specialist. For any baby with an out-of-range newborn screen, follow up promptly with the screening or care team, regardless of sex; an ill newborn needs urgent medical assessment. See the ACMG X-ALD newborn-screening guidance.