Patient Genetic and Family Carrier Testing
Mirum Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder Genetic Test
Myriad Women’s Health (Formerly Counsyl)
Peroxisomal Lab at Kennedy Krieger Institute
Research Resources
See also our page on Clinical Trials
Foundations and Support Groups
United Leukodystrophy Foundation– Support for all leukodystrophies.
Australian Leukodystrophy Support Group– Support for families facing leukodystrophy in Australia.
European Leukodystrophy Foundation– Support for families facing leukodystrophy in Europe.
Axel Foundation– Foundation centered around support for families facing Zellweger Spectrum Disorder in the Netherlands.
Zellweger UK– Foundation in the United Kingdom focused on Zellweger Spectrum Disorder.
PBD Canada– Support group in Canada for families facing PBD-ZSD and the related peroxisomal disorders.
Fundacion Lautarote Necesita– Foundation supporting leukodystrophy research in Argentina.
Make-A-Wish Foundation– Provides wishes for children with terminal illnesses.
DeafBlind and Educational Resources
National Center on Deafblindness (NCDB)
National Family Association for DeafBlind (NFADB)
Helen Keller National Center (HKNC)
Texas School for the Blind and Visually Impaired (TSBVI)
Pyramid of Learning (Typical Learner vs Deafblind Learner)
A Family’s Guide to Interveners (Download Booklet)
Open Hands, Open Access Deafblind Intervener Modules
Central Michigan University – Deafblind Intervener Online Courses
Utah State University – Deafblind Intervener Online Courses
National Intervener Certification E-Portfolio (NICE) For Interveners
Rare Disease Advocacy and Education
National Organization for Rare Disorders (NORD)
National Alliance on Caregiving Guidebook: Supporting Diverse Caregivers
The National Economic Burden of Rare Disease Study (February 2021)
