Family Support Resources
Give an Hour – Rare Caregivers
Give an Hour aims to create resilient communities of support for rare disease caregivers and families. Through one-on-one peer support, group support, professional training and research, Give an Hour strives to build a sustainable support system for rare caregivers.
Visit the Give an Hour Rare Caregivers website to find peer support, self-care tips, support groups and more.
Global Genes is a non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. It aims to connect, empower and inspire the rare disease community.
The Global Genes website includes a RARE Portal, which is an online community for patients, caregivers and more to share resources and create discussion groups.
Great Lakes Disability and Business Technical Assistance Center
Materials on ADA and other legislation for people with disabilities. Services include tech. assistance, education and training, referral network and dissemination of materials.
Grupo SALTO (Sociedad de Autismo Latina Trabajando con Optimismo) aims to provide support in Spanish for Latino families who have children who are differently abled, with a focus on autism.
Grupo SALTO provides culturally and linguistically appropriate training, education and services.
Guaranteed Rate Foundation provides financial support to those working to overcome extraordinary hardships.
Knowing that it can be difficult to ask for help in times of need, the foundation strives to make the request for assistance process as simple as possible and encourages applicants to contact them with any questions.
Guide for New Mental Health Caregivers
Mental Health America has created an online guide to help new mental health caregivers navigate their role. The guide includes information about getting started after a diagnosis, challenging stigma, navigating red tape, understanding challenges during recovery, knowing the role of legal caregivers, taking care of yourself and more.
Hands & Voices is a non-profit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing. They are non-biased about communication methodologies and believe that families can make the best choices for their children if they have access to good information and support.
Hands & Voices Guides and Resources for Deaf/Hard of Hearing Plus
Hands & Voices provides a variety of resources specific to children who are deaf/hard of hearing plus – the combination of being deaf or hard of hearing and having additional medical complexities or other needs.
Information includes the “Connecting Families of Children who are Deaf or Hard of Hearing Plus (DHH Plus) with Resources and Support” guide, an Educational Plan Checklist for D/HH-Plus Students and presentations, articles and other guides for families of children who are D/HH plus.
Hands and Voices Virtual Waiting Room
Hands & Voices virtual waiting room provides resources and connections for families with children who have been referred to or are in the care of an audiologist and who are receiving those services through technology or “telehealth.” Much of the information is also useful for families who are preparing for onsite visits.
Hands and Voices virtual waiting room includes:
- A video about the importance of next steps when your child is referred for more testing after a hearing screening
- A guidebook for parents about audiology and telehealth
- Information about tele-audiology options
- Questions to ask your audiologist, understanding your child’s audiogram, help making decisions with communication and more
- Connections to family-to-family support from trained parent leaders
- Explanations of help offered by a variety of professionals in addition to your child’s audiologist
- Resources to promote health and well-being for you and your child
- A link to email a Hands & Voices trained parent who can answer your questions and direct you to additional resources
This organization is committed to protecting the rights of children, people with disabilities, & low income adults.
