Resource Directory /

Medical/Health Resources

  • National Consortium on Deaf-Blindsun-icon

    Clearinghouse is a federally funded information and referral service for children ages 0-21 years who are deaf-blind.  Site provides access to a broad spectrum of information at no cost.

  • 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 Researchsun-icon

    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 Disorderssun-icon

    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 PKU Alliancesun-icon

    The National Phenylketonuria (PKU) Alliance (NPKUA) provides help with understanding and managing PKU from diagnosis to adulthood. NPKUA resources include a New Parent Toolkit, a downloadable PKU Binder, 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+

  • 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