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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Category: Medical Research

  1. Chiari and Syringomyelia Foundation csfinfo.org

    The Chiari & Syringomyelia Foundation, Inc., a 501(c)(3) organization built on leadership, vision and commitment to find a cure for Chiari malformation (CM), syringomyelia (SM) and related disorders, was founded in October 2007.

    Contact Information



    CSF, Inc. 29 Crest Loop Staten Island, NY 10312

  2. Cleft Palate Foundation cleftline.org

    The Cleft Palate Foundation  provides Resources and  comprehensive information to educate patients, families, and professionals, makes  referrals to cleft/craniofacial treatment teams, offers telephone and online counseling and support service.

    Educates parents and healthcare professionals on how to feed an infant with a cleft. Funds  research to learn all we can about prevention and care

    Contact Information

    (800) 242-5338
    (919) 933-9044

    Cleftline 1-800-24-CLEFT (800-242-5338


    1504 East Franklin Street, Suite 102 Chapel Hill, NC 27514-2820 USA ,

  3. Finding a Cure for Epilepsy and Seizures (FACES) faces.med.nyu.edu

    The mission of FACES is to improve the quality of life for all those affected by epilepsy and seizures. FACES is affiliated with NYU Langone Medical Center and its Comprehensive Epilepsy Center. FACES funds research to improve epilepsy care, advances new therapies, and fosters a supportive community for children, families and caregivers who live with the challenges of epilepsy.

    Contact Information

    FACES Main Line: (646) 558-0900


    223 East 34th Street (between 2nd and 3rd Avenues) New York, NY 10016

  4. Genetic Alliance geneticalliance.org

    An organization devoted to promoting optimum healthcare for people suffering from genetic disorders.  Network of 1000 disease-specific advocacy organizations.  Resources include online genetic testing database, provides information about support groups, clinical descriptions, treatments, research, insurance issues.

    Contact Information


  5. 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



  6. Hydropcephalus Association hydroassoc.org

    The Hydrocephalus Association provides support, education and advocacy for people whose lives have been touched by hydrocephalus and the professionals who work with them. We strive to ensure that families are empowered with educational materials, informed about the latest research, and have access to quality health care. We advocate for increased research and funding to advance understanding, improve diagnosis and treatment, and find a cure.

    Contact Information

    (301) 202-3811
    (888) 598-3789


    Hydrocephalus Association 4340 East West Highway, Suite 905 Bethesda, MD 20814

  7. March of Dimes Foundation marchofdimes.com

    Works on behalf of the prevention of birth defects and provides support to families affected by birth defects (prematurity, heart effects, genetic diseases)

    Contact Information



    New York Chapter: 515 Madison Avenue, 20th Floor, New York, NY 10022

  8. 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.

  9. Muscular Dystrophy Association mda.org

    The Muscular Dystrophy Association is the world’s leading nonprofit health agency dedicated to finding treatments and cures for muscular dystrophy, amyotrophic lateral sclerosis (ALS) and other

  10. 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