Resources - The Global Foundation for Peroxisomal Disorders

Resources

As part of our mission to educate, empower, and support those affected by peroxisomal disorders, the GFPD has compiled a wide range of resources for our community—including individuals with peroxisomal disorders, their families, caregivers, and professionals. Our goal is to provide reliable information to help you make informed decisions about care, connection, and support. Resources are organized by category for easy navigation. Click on any item below to access the resource directly or explore additional materials on that topic.

Bereavement Resources

See our Bereavement Resources page

GFPD CARE Card– A digital and printable resource created by bereaved parents to help families, friends, and communities turn caring intentions into meaningful support.

Caregiver Resources

Caregiver HELP Card– A valuable resource for caregivers and those who want to support them. It takes the guesswork out of how to show up in ways that truly help.

Caregiving in the U.S. 2020 Report– A national profile of family caregivers reporting on a sample of 1,392 caregivers age 18 and older who cared for an adult.

Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses– A comprehensive set of resources and guidance to address many of the challenges facing caregivers.

DeafBlind and Educational Resources

A Family’s Guide to Interveners

Find your US State Deafblind Project

Central Michigan University- Deafblind Intervener Online Courses

Deafblind International (DbI)

Helen Keller National Center (HKNC)

National Intervener and Advocate Association (NIAA)

National Center on Deafblindness (NCDB)

National Family Association for DeafBlind (NFADB)

National Intervener Certification E-Portfolio (NICE) for Interveners

Open Hands, Open Access Deafblind Intervener Modules

Pyramid of Learning (Typical Learner vs Deafblind Learner)

Texas School for the Blind and Visually Impaired (TSBVI)

Foundations and Support Groups

ALD Alliance– Support for families facing an adrenoleukodystrophy (ALD) diagnosis.

Australian Leukodystrophy Support Group– Support for families facing leukodystrophy in Australia.

Axel Foundation– Foundation centered around support for families facing Zellweger Spectrum Disorder in the Netherlands.

European Leukodystrophy Foundation– Support for families facing leukodystrophy in Europe.

Fundación Lautarote Necesita– Foundation supporting leukodystrophy research in Argentina.

Global DARE– Foundation supporting Adult Refsum Disease patients and families.

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

RhizoKids International– Foundation supporting Rhizomelic Chondrodysplasia Punctata (RCDP) patients and families.

United Leukodystrophy Foundation– Support for all leukodystrophies.

Zellweger UK– Foundation in the United Kingdom focused on Zellweger Spectrum Disorder.

Patient Genetic and Family Carrier Testing

GFPD Webinar: Navigating Family Planning After a Rare Diagnosis

Mirum Peroxisome Biogenesis Disorder-Zellweger Spectrum Disorder Genetic Test

Myriad Women’s Health (Formerly Counsyl)

Peroxisomal Lab at Kennedy Krieger Institute

Rare Disease Advocacy and Education

Global Genes: RARE Toolkits

National Organization for Rare Disorders (NORD)

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

Research Resources

See our Clinical Trials page

See our Scholarly Articles page