ALD resources for families
New to adrenoleukodystrophy? Begin with “What is ALD?” below. You can also go straight to the topic you need.
We’re a family living with ALD, sharing our story, what we’re learning, and resources that may help other families find their way. This site is for information and support. For questions about your family’s health, talk with your pediatrician, doctor, genetic counselor, or ALD care team.
The starting guide
What is ALD?
Understand what adrenoleukodystrophy is, how it is found, what monitoring is for, and where to go next.
Start with the ALD overviewScreening & genetics
Newborn screening and diagnosis
Understanding an out-of-range screen, follow-up, and questions for your care team.
Genetics and inheritance
Understanding ABCD1 results, family testing, and questions for a genetic counselor.
The Grey Zone and uncertain results
ABCD1 variants of uncertain significance, the Grey Zone Project, and questions for specialists.
Monitoring & care
Cerebral ALD
An introduction to brain monitoring and conversations with your specialists.
Adrenal health
Information about adrenal insufficiency, monitoring, and discussing an illness plan.
Adults with ALD
Adult care and support
Coordinating care, changing clinics, and making the move to adult services.
Adrenomyeloneuropathy (AMN)
Spinal cord and nerve symptoms, follow-up, and support for daily life.
Women with ALD
Women’s own symptoms, follow-up, everyday care, and community support.
Treatment & research
Treatments, research and clinical trials
An overview to help you prepare for conversations with ALD specialists.
Family life
Family life, school and support
Practical help with appointments, school, siblings, uncertainty, and finding support.
Community & support
ALD resource directory
Thirteen organizations and medical resources, with a short guide to what each offers.