Learn more about the Resource Directory

Welcome to the St. Mary’s Healthcare System Resource Directory

This resource directory is for families/caregivers of children who have medically complex needs or long-lasting conditions that require extra health care and support services.

The information in this directory is provided to help you find resources to assist you with finding help for your child and family. The range of care/disability/health issues varies amongst children so the information may or may not pertain to your child.

What you'll find

After a family learns that their child is ill parents/caregivers typically begin to think about how they can best care for their child. The resources in this directory include agencies, service providers, advocacy organizations, and other resources to assist with providing a quality life for children with medically complex needs.

To find a resource enter your area of interest in the search box on the side bar and the location in the box located on the top of the screen. The directory is intended to assist you with being the best advocate for your child. Although we attempt to keep the directory current resources change constantly.

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All Resources

  1. Family Voices familyvoices.org

    Helps families who have children with special health care needs through national parent to parent networks. Provides family’s tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

    Contact Information

    National (505)872-4774 or (888)835-5669
    Parent to Parent NYS (518)359-3006
    Toll Free (800)305-8817

  2. New York State Department of Health Resource Directory For Children and Young Adults with Special health Care Needs health.ny.gov

    Provides resources for families of children and young adults who have serious illness or long lasting conditions for which they need extra health care and support services. Availabile in English, Spanish, French, Russian and Chinese. For copies vicsit www.health.ny.gov Resource Directory for Children with Special Health care Needs. Or ask the patient navigator or social worker for a copy.

  3. Center for Independence for the Disabled-NY cidny.org

    Provide a variety of services for people with disabilities.  Benefit counselors can help with housing, health benefits, transportation, youth services, SSDI, SSI, food stamps. Brooklyn Parent Center provides outreach, information and referrals to parents, grandparents and caregivers of children ages 3-21 with disabilities.

    Contact Information

    Brooklyn Center for Independence of the Disabled (BCID):  718-998-3000, TTY: 718-998-7406

    Brooklyn Parent Center: 718-998-3000

    Bronx Independent Living Services, Inc:  718-515-2800 ext. 116   TTY: 718-515-2803

    Queens Center for Independence of the Disabled:  646-442-1520   718-886-0427    TTY: 886-948-1064


    Brooklyn Center for Independence of the Disabled (BCID): 27 Smith St., ste 200, Brooklyn, NY 12201 Brooklyn Parent Center: 27 Smith St., 2nd floor, Brooklyn, NY 12201 Bronx Independent Living Services, Inc: 4419 Third Avenue, Ste 2C, Bronx, NY 10457 Queens Center for Independence of the Disabled:80-02 Kew Gardens Rd, #107, Kew Gardens, NY 11415

  4. The Legal Aid Society legal-aid.org

    Provides free legal services for clients who cannot afford to pay for counsel.  Represents low-income families and individuals in legal matters involving housing, benefits, domestic violence, disability, family issues, health, employment, immigration, HIV/AIDS, prisoners’ rights, and elder law.

    Contact Information

    Queens:   718-286-2450

    Brooklyn:   718-645-3111

    Bronx:   718-579-3000


    Queens: 12-46 Queens Blvd, Kew Gardens, NY 11415 Brooklyn: 111 Livingston Street, 7th floor, Brooklyn, NY 11201 Bronx: 260 East 161st Street, Bronx, NY 10451

  5. Epilepsy Foundation of Metropolitan New York efmny.org

    Provides a wide variety of services and supports to persons with epilepsy, their families and the community.  Respite services, service coordination, information and referral services, socialization programs and educational presentations.

    Contact Information



    65 Broadway, ste 505, New York, NY 10006

  6. National Institutes of Health (NIH) nih.gov

    Nation’s leading medical research agency.  Has different institutes for specific disease areas.

    Clinical Trials: database of research studies for new therapies, to test new ways of using known treatments or to find out more about a disorder.   To learn about clinical trials or to find a clinical trial that your child might be able to participate in, visit:  www.ClinicalTrials.gov

    National Institute of Neurological Disease (NINDS): leading supporter of biomedical research on disorders of the brain and nervous system.     www.ninds.nih.gov

    Office of Rare Diseases (NORD):  provides information on specific rare diseases, patient advocacy groups, research studies.     www.raredisease.info.nih.gov

  7. New York State Genetic Services Program wadsworth.org

    Program ensures that individuals with genetic disorders have access to genetic services (i.e diagnostic, counseling and preventive services).  All services are available whether or not the patient is able to pay for them.

    Contact Information


  8. Friends of Karen friendsofkaren.org

    Provides emotional, financial and advocacy support for children with a life-threatening illness and their families.

    Contact Information



    116 East 16 Street, 5th Floor, New York, NY 10003

  9. Healthy Children healthychildren.org

    Provide information/resources from the American Academy of Pediatrics.  Includes information on chronic illnesses and how to help your child.

    Contact Information



  10. Medline Plus nlm.nih.gov

    National Institues of Health’s website for patients and their families and friends. Provides information about diseases, conditions, in language you can understand.  You can also get links to the latest medical research on your topic or find out about clinical trials on a disease or condition.  English/Spanish.