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
Communications and Learning Strategies
Pyramid of Learning (Typical Learner vs Deafblind Learner)
Interveners / Intervenors
A Family’s Guide to Interveners (Download Booklet)
Central Michigan University- Deafblind Intervener Online Courses
National Intervener and Advocate Association (NIAA)
National Intervener Certification E-Portfolio (NICE) for Interveners
Open Hands, Open Access Deafblind Intervener Modules
Organizations – US
American Association of the DeafBlind
Helen Keller National Center (HKNC)
National Center on Deafblindness (NCDB)
National Family Association for DeafBlind (NFADB)
National DeafBlind Equipment Distribution Program
Texas School for the Blind and Visually Impaired (TSBVI)
Organizations – International
CNIB Deafblind Community Services (DBCS)
Global Deafblindness Resource Hub
Society of Deafblind Parents (Nepal)
Deafblind Association of Nepal
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
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
