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.

Please be sure to check back for a new look and additional resources soon!

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

GFPD Training Series: Why We Use Hand-UNDER-Hand Facilitation

Reflections of DeafBlindness: Hands and Touch

Talking the Language of the Hands and Touch

Pyramid of Learning (Typical Learner vs Deafblind Learner)

Hand-Under-Hand Interactions

The Importance of Hands for the Person Who is Deafblind

Back to School Series: Pyramid of Learning

Interveners / Intervenors

A Family’s Guide to Interveners (Download Booklet)

The Intervener in Early Intervention and Educational Settings for Children and Youth with Deafblindness

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 (AADB)– A national advocacy organization led by and for people who are deafblind. It promotes equal access, independence, communication, and full participation in community life.

Hands & Voices– A parent-led organization supporting families of children who are deaf or hard of hearing, regardless of communication approach. It provides family support, information, advocacy, and resources to help families make informed decisions about their child’s development and education.

Helen Keller National Center (HKNC)– Provides specialized services, training, and resources for individuals who are deafblind. Its programs focus on developing communication, technology, orientation and mobility, vocational skills, and greater independence.

National Center on Deafblindness (NCDB)– Provides information, technical assistance, and resources related to the education and development of children and youth who are deafblind. It works with families, educators, and state programs to improve educational outcomes and support lifelong learning.

National Family Association for DeafBlind (NFADB)– A national organization that supports families of individuals who are deafblind. It provides information, connections, advocacy, and opportunities for families to share experiences and support one another.

National DeafBlind Equipment Distribution Program (NDBEDP)– Helps eligible individuals who are deafblind obtain specialized telecommunications equipment and related services. The program is designed to improve access to communication technologies and increase independence.

Perkins School for the Blind– Provides education, resources, and services for people who are blind, visually impaired, or deafblind. Its programs include educational services, professional training, assistive technology, and resources for individuals, families, and educators.

State Deafblind Projects– Provide specialized support and technical assistance to children and youth who are deafblind and their families, educators, and service providers. Programs vary by state but commonly offer training, consultation, resources, and connections to local services.

Texas School for the Blind and Visually Impaired (TSBVI)– Provides educational services, training, and resources for students who are blind or visually impaired, including students who are deafblind. TSBVI also supports families, educators, and professionals through training, consultation, and specialized resources.

Organizations – International

Deafblind International (DbI)– A global network that connects organizations, professionals, researchers, families, and individuals who are deafblind. It promotes collaboration, advocacy, knowledge sharing, and the development of services and opportunities for people who are deafblind worldwide.

CNIB Deafblind Community Services (DBCS)– Provides specialized support to people who are deafblind across Canada. Its services help individuals develop independence, access their communities, communicate, and participate more fully in daily life.

Deafblind UK– A national organization supporting people who are deafblind or living with combined sight and hearing loss in the United Kingdom. It provides practical support, information, advice, advocacy, and opportunities for connection and social participation.

Deafblind Australia– A national organization that advocates for and supports people who are deafblind throughout Australia. It provides information, resources, education, and connections to services while promoting awareness, inclusion, and equal participation.

Sense International– A global organization working to improve the lives of people who are deafblind and those with complex disabilities, particularly in low- and middle-income countries. It partners with local organizations and communities to develop inclusive education, healthcare, livelihoods, and support services.

Global Deafblindness Resource Hub– An online resource that brings together information, research, tools, and resources related to deafblindness from around the world. It can help individuals, families, professionals, and organizations find international knowledge and resources in one place.

Society of Deafblind Parents (Nepal)– Supports families of children and individuals who are deafblind by providing information, advocacy, and opportunities for connection. It works to promote awareness, education, inclusion, and access to appropriate services for people who are deafblind and their families.

Deafblind Association of Nepal– Advocates for the rights, inclusion, and well-being of people who are deafblind in Nepal. The organization works to increase awareness and access to education, communication, rehabilitation, and other support services.