Resource Directory /

Health Condition and Disability-Specific Resources

  • MPHI Center for Precision Public Health

    The MPHI Center for Precision Public Health provides educational opportunities for clinicians, public health professionals, community organizations and families. The center focuses on improving the health and well-being of all through research, supporting data-driven initiatives, facilitating community-led program development, and providing technical assistance.

    MPHI also provides free CME and CE Modules for families and professionals. Topics include:

    • Improving care for developmental disabilities and dysmorphic features
    • Patient-centered newborn screening communication
    • Decoding genetic test reports for frontline clinicians

  • MSUD Family Support Groupsun-icon

    Maple Syrup Urine Disease (MSUD) Family Support Group is a non-profit, mostly volunteer-run organization serving families and professionals worldwide. It provides:

    • Support for families affected by MSUD
    • Education about the condition and management
    • Research
    • Advocacy

    For questions, please fill out the online form on MSUD Family Support Group’s website.

  • Muscular Dystrophy Association

    The Muscular Dystrophy Association (MDA) provides comprehensive information and resources to help with understanding, managing and living day-to-day with muscular dystrophy and related neuromuscular diseases.

    MDA programs and resources include:

    • The MDA Resource Center providing one-on-one support by phone or email for individuals and families looking for resources, activities and more
    • Durable Medical Equipment (DME) Grant Program
    • Nationwide summer camps
    • Resources for caregivers
    • Community education and services

  • My Heart Visit

    My Heart Visit is a program from Mended Hearts that allows heart patients and their families to connect with trained volunteers who are patients themselves, a parent of a child with a heart condition or a caregiver of a loved one with heart disease.

    You can connect with someone by phone, text, email or video. It includes the Heartline Hotline at (844) 432-7887 (1-844-HEART87).

  • myFace

    myFace is a nonprofit organization that provides individuals and families affected by cleft and other craniofacial differences access to personal stories, education and support.

    Resources include:

    • Information on craniofacial conditions
    • Parent resources
    • Virtual craniofacial support groups and networking opportunities
    • Educational webinars and podcasts
    • Home Away From Home family apartments to use during medical care

    For questions, please contact myFace at (917) 720-4701 or info@myface.org.

  • National Association for Down Syndrome

    The National Association for Down Syndrome (NADS) serves individuals with Down syndrome and their families. NADS’ website provides a variety of webinars, publications and resources for the Chicago metropolitan area and beyond.

    NADS also offers a “Congratulations Basket and Referral Program.” Please note that the organization can only deliver baskets to specific Chicago-area hospitals.

    For questions, contact NADS at (630) 325-9112 or info@nads.org.

  • National Association of the Deaf

    The National Association of the Deaf (NAD) preserves and promotes the civil, human and linguistic rights of deaf and hard-of-hearing individuals in the United States and U.S. territories. Resources include videos in American Sign Language (ASL) on a wide range of topics, a list of universities and education resources by state, webinars and more for deaf and hard-of-hearing people, their families and friends.

  • National Center for Hearing Assessment and Managementsun-icon

    The National Center for Hearing Assessment and Management (NCHAM) at Utah State University supports Early Hearing Detection and Intervention (EHDI) programs throughout the United States. NCHAM helps EHDI programs ensure that children who are deaf or hard of hearing (DHH) are identified through newborn, infant and early childhood hearing screening and receive the diagnostic and early intervention services they need.

    NCHAM provides:

    • Technical assistance
    • Training, video tutorials and podcasts
    • Communication options and resources
    • Access to information about evidence-based practices
    • Partnership opportunities with national EHDI systems of care organizations and other key stakeholders, including those that represent and/ or serve families with children who are DHH.

  • National Center on Deafblindnesssun-icon

    The National Center on Deafblindness (NCDB) is a national technical assistance center that works with state deafblind projects and other partners to improve educational outcomes and quality of life for children ages 0 -21 who are deafblind and their families. NCDB focuses on national initiatives and provides resources in key areas, including:

    If you have any questions or need help, please fill out the online form on NCDB’s website.

  • National Center on Deafblindness

    The National Center on Deafblindness (NCDB) is part of a network of projects for children and youth with deaf-blindness (birth through 21), providing information and learning and development tools for families and educators. NCDB resources include:

    • An overview of deaf-blindness
    • Practice guides and professional development
    • Spanish resources

    NCDB includes state deaf-blind projects in every state, Puerto Rico, the District of Columbia, the Pacific Basin and the Virgin Islands. For questions regarding Illinois, visit the Illinois Deafblind Project website for more details.