Resources
Curated information and tools for patients, clinicians, and researchers.
Curated information and tools for patients, clinicians, and researchers.
Free Resource
Your complete guide to understanding, managing, and finding support for Autosomal Dominant Leukodystrophy, written for patients, caregivers, and families navigating a new diagnosis.
Download Free PDFUnited Leukodystrophy Foundation (ULF)
Support groups, patient resources, and community
Find a Genetic Counselor (NSGC)
National Society of Genetic Counselors directory
Quarterly Patient Webinars
Q&A sessions led by patient advocates Kim Stairs and Jaspal Kohli. Email for the calendar invite; next session Q2 2026.
2025 Clinical Practice Guidelines
Dhamija et al., Neurology Genetics. The first-ever clinical practice guidelines for diagnosis, management, and surveillance of LMNB1-Related ADLD.
PubMed: ADLD Literature
Full publication library for autosomal dominant leukodystrophy research
FDA Guidance: Natural History Studies
Rare Diseases: Natural History Studies for Drug Development