Family Support Resources
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.
Specifically for men who have children with special needs, information, advocacy and support.
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 PKU alliance provides information including the latest research, a guide for new parents, educational videos, cooking and food, personal stories, scholarships, and legislation and policy.
Individuals impacted by Phenylketonuria (known as PKU) may also download the PKU Handbook, a guide to help understand, organize information and manage PKU from diagnosis to adulthood.
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, links to support and advocacy groups, and referrals for many 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.
Normal Moments supports Chicagoland families with critically ill/medically complex children up to age 17 by providing help with many household and outdoor tasks. The organization matches volunteers based on the families’ needs, volunteer location and interests. Support includes:
- In-home help with necessary chores such as house cleaning, laundry, pet care and other errands
- Outdoor services such as lawn maintenance and snow removal
- Annual holiday programs
Note that Normal Moments volunteers may not provide care for dependents. A responsible adult over 18 must be in the house while a volunteer is in the house with children.
