Family Support Resources
National Domestic Violence Hotline
Twenty-four hours a day, seven days a week, 365 days a year, the National Domestic Violence Hotline provides essential tools and support to help survivors of domestic violence so they can live their lives free of abuse.
Contacts to The Hotline can expect highly-trained, expert advocates to offer free, confidential, and compassionate support, crisis intervention information, education and referral services in over 200 languages.
Call (800) 799-SAFE (7233) or (800) 787-3224 (TTY). You can also text “START” to 88788 or chat live on The Hotline website.
National Down Syndrome Society
The National Down Syndrome Society (NDSS) aims to empower individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities and shifting public perceptions.
Its resources include information on Down syndrome across the lifespan as well as in the areas of aging, caregiving, education, employment, health and more.
National Fatherhood Initiative
The National Fatherhood Initiative is a non-profit organization that aims to end father absence. They provide a variety of free resources for dads and organizations.
National Maternal Mental Health Hotline
The National Maternal Mental Health Hotline is free, confidential and here to help 24 hours a day, seven days a week in English and Spanish for anyone who is pregnant or just had a baby.
Trained counselors can listen to what you’re going through, connect you with local support groups and organizations, and refer you to other healthcare professionals if you need more care.
Call or text (833) 852-6262 or (833) TLC-MAMA.
National Paralysis Resource Center
The National Paralysis Resource Center (NPRC), operated by the Christopher and Dana Reeve Foundation, seeks to improve the quality of life for people living with paralysis through grants, information and advocacy. The NPRC assists people as they navigate through the various stages of their recovery after the diagnosis of paralysis.
NPRC offers free tips and information on health, costs and insurance, choosing a wheelchair, home and travel, and help for caregivers. NPRC also offers:
- Information specialists
- Peer and family support programs
- Updates on advocacy/policy initiatives
- A program for veterans and current service members
If you have questions, please email Peer@ChristopherReeve.org.
Offers emotional support from a trained advocate to help you become an empowered and stronger parent. Parent advocates can list, offer emotional support, help you problem-solve, connect you with local resources, help you explore new resources and more.
The National Parent Helpline is available Monday through Friday from 12 – 9 p.m. at (855) 427-2736 (855-4A PARENT).
The National Phenylketonuria (PKU) Alliance (NPKUA) provides help with understanding and managing PKU from diagnosis to adulthood. NPKUA resources include a New Parent Support Kit, a Kindergarten Kit for children entering kindergarten, a downloadable PKU Binder Toolkit, guides for educators and information on the latest treatments, insurance coverage and terms, a mentor program, cooking and food, research grants and more.
NPKUA hosts “Community Call.” These monthly peer support groups offer a place for sharing and connecting with others who understand the unique challenges of living with PKU. Please see the events calendar on NPKUA’s website for meeting times and other details for each of the following groups:
- Caregivers of children ages 0 to 3
- Caregivers of children ages 3 to 12
- Caregivers of teens ages 13 to 17
- Adults with PKU ages 18+
- Adults with PKU ages 40+
ARCH National Respite Network and Research Center provides a National Respite Locator on its website as well as additional resources for finding respite in your community.
NeuroJourney is an educational resource for parents, caregivers and clinicians navigating the ever-evolving needs of children with severe neurological impairment (SNI).
You can find both practical and medical information and insights from parents and clinicians about the social and emotional experiences common to having a child with SNI. Resources include a Caregiver Worksheet as well as guidance to help build the care team, prompts for conversations with specialists and more.
NORD: National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD) offers support, information and a variety of events for clinicians, researchers, patients and families affected by rare diseases.
NORD’s Resource Center provides patients and caregivers with free webinars, fact sheets, infographics, support and advocacy groups links, and referrals for rare disorders.
NORD’s RareCare Program website provides a list of financial assistance programs that can help patients obtain life-saving or life-sustaining medication they could not otherwise afford.
NORD’s State Resource Center contains local, state and national organizations listed by state or by topic offering free or low-cost services for people impacted by rare diseases.
NORD’s free, self-paced online course “From Records to Research: Making Sense of Health Data for Rare Diseases” provides help for understanding health data, research participation and how both contribute to improving treatments and care. The course is available:
