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 Heart, Lung and Blood Institute
The National Heart, Lung and Blood Institute (NHLBI) website provides information to help you learn more about heart, lung, blood and sleep conditions as well as diagnostic tests and treatments.
The NHLBI website’s health topics include asthma, heart-healthy living, high blood pressure, sickle cell disease and sleep apnea.
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 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.
National Resource Center for Patient/Family-Centered Medical Home
The National Resource Center for Patient/Family-Centered Medical Home provides information, support, and advocacy for families and pediatric healthcare professionals who care for children with special needs in managed care arrangements. The “medical home” isn’t a place. It is an approach focusing on strengthening and improving the system of care for children and youth with special health care needs and their families.
Located on the American Academy of Pediatrics website, the National Resource Center for Patient/Family-Centered Medical Home offers:
- Information on why a medical home is important
- A medical home overview and FAQs
- Tools and resources for families
- Resources for medical professionals
- Care coordination resources
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.
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.