HELP CARD

Click here to download the HELP CARD, a valuable resource for all caregivers. This resource was designed to help caregivers express how they can best be supported by others in their community.

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)

Intervener Information

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

Global Genes: RARE Toolkits

National Organization for Rare Disorders (NORD)

National Alliance on Caregiving Guidebook: For Caregivers of Children with Rare and Serious Illnesses

National Alliance on Caregiving Guidebook: Supporting Diverse Caregivers

The National Economic Burden of Rare Disease Study (February 2021)