Care Resources

The GFPD has compiled the resources below for families impacted by peroxisomal disorders, grouped in categories for easy navigation. If you know of a resource that may be helpful to our families, please email contactus@thegfpd.org

GeneReviews® and OMIM®

GeneReviews®, is an international point-of-care resource for busy clinicians, provides clinically relevant and medically actionable information for inherited conditions in a standardized journal-style format, covering diagnosis, management, and genetic counseling for patients and their families.

Each chapter in GeneReviews® is written by one or more experts on the specific condition or disease and goes through a rigorous editing and peer review process before being published online.

OMIM®, or the Online Mendelian Inheritance in Man®is a comprehensive, authoritative compendium of human genes and genetic phenotypes that is freely available and updated daily.

The full-text, referenced overviews in OMIM® contain information on all known mendelian disorders and over 15,000 genes. OMIM® focuses on the relationship between phenotype and genotype. It is updated daily, and the entries contain copious links to other genetics resources.

Scholarly Articles >>

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

Axel's Metabolic Disorder (educational comic book created by Axel Foundation)

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

Bereaved Parents of PBD Kids Support Group- This group is hosted by a mother who has lost a child to a peroxisomal disorder.

Make-A-Wish Foundation- Provides wishes for children with terminal illnesses

Lily's List - Lily's List works with pediatric patients that have a need for home health nursing. They provide a Lily's List provides a box of supplies for children who have home health nursing.