Medical/Health 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 Immunization Program (NIP)
The Centers for Disease Control and Prevention (CDC) provides answers to your questions about immunizations.
National Institute of Dental and Craniofacial Research
The mission of the Institute (NIDCR) is to improve oral, dental and craniofacial health through research, research training, and the dissemination of health information.
National Institute on Deafness & Other Communication Disorders
The National Institute on Deafness and Other Communication Disorders (NIDCD) conducts and supports research in the normal and disordered processes of hearing, balance, taste, smell, voice, speech, and language. The website offers health information and resources that address these areas.
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.
National Resource Center for Patient/Family-Centered Medical Home
Family members are the primary caregivers and support in a child’s life. Practices and healthcare organizations that are truly family-centered provide care in equal partnership with families, caregivers and children.
This page for families and caregivers from the National Resource Center for Patient/Family-Centered Medical Home includes tools, resources and links to information that will assist families in successfully partnering with their child’s medical home. It includes templates for how to build a care plan for your child.
National Resource Hub for Moving to Adult Health Care for Youth with Disabilities
The Center for Transition to Adult Health Care for Youth with Disabilities offers a wide range of tools to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12 to 26 to direct their transition from pediatric to adult care. This national site is a one-stop shop where young people and their families, clinicians, and direct care providers can find videos and other resources for understanding and navigating the transition to adult health care.
Site resources include:
- An “Introduction to Health Care Transition (HCT)” for youth and young adults
- Videos and interactive quizzes
- Changes in insurance and legal rights
- Quick guides and infographics
Navigating Health Insurance and the Health Care System
The Patient Advocate Foundation (PAF) provides valuable information and understanding to patients navigating the healthcare system.
PAF’s Education Resource Library offers information on a wide variety of individual health and health insurance-related topics including:
- Finding and Selecting Insurance
- Making the Most of Your Health Insurance
- Engaging with Insurers: Appealing a Denial
- Patient Advocate Foundation Drug Formulary FAQ
Watch their short tutorial “Welcome to the Education Resource Library” to learn how to find and share materials. Many of the materials are available in English and Spanish.
PAF is also available by phone Monday – Friday, 7:30 a.m. – 4 p.m., at (800) 532-5274.
Information on drug assistance programs and how to request help. Includes an index of available medications.
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.