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.

Got it!

Category: Disease Information

  1. Aarons Tracheostomy Care tracheostomy.com

    Tracheostomy.com (Aaron’s Tracheostomy Page) is an independent nonprofit project that is family run, family centered and impartial. Every attempt is made to provide information that follows accepted standards of care for pediatric tracheostomy care in a home setting. This information is free of charge and provided without annoying advertisements

  2. American Association of Kidney Patients aakp.org

    The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease

    Contact Information

    813-636-8100 Phone
    800-749-AAKP Toll-Free


    AAKP 2701 N. Rocky Point Drive Suite 150 Tampa, FL 336

  3. American Speech and Hearing Association asha.org

    The American Speech-Language-Hearing Association is committed to ensuring that all people with speech, language, and hearing disorders receive services to help them communicate effectively. Here you will find resources to help you understand communication and communication disorders – See more at: http://www.asha.org/public/#sthash.z8uNAGXJ.dpuf

  4. Association for Neurologically Impaired Brain Injured Children (ANIBIC) anibic.org

    Offers a broad range of services for children, as young as 5, and throughout adulthood, who have an injury to the brain.

    Contact Information

    Phone: 718-423-9550

    Email: mail@anibic.org


    61-35 220th Street, Oakland Gardens, NY 11364

  5. Brain Injury Association NYS- The Family Advocacy Counseling and Training Services Program (FACTS) bianys.org

    If you or a member of your family sustained a brain injury prior to the age of 22 and you live in New York State, a FACTS Coordinator can help you!

    Contact Information

    Carmen Garcia - Email
    Counties: Nassau & Suffolk
    (631) 423-1058

    Ellie Bibawy, CBIS - Email
    Counties: NYC Region (Bronx & Queens)
    (718) 234-3586

    Jan Wollney, CBIS - Email
    Counties: NYC Region (Brooklyn & Staten Island)
    (718) 356-2851

  6. Brain Injury Association of New York State (BIANYS) bianys.org

    Advocates on behalf of individuals with brain injuries and their families, and promotes prevention.  Provides education, advocacy, and community support services that lead to improved outcomes for children and adults with brain injuries and their families.  Provides a toll-free Family Help Line, chapters & support groups.

    Contact Information


    Family Help Line: 1-800-444-6443   or    1-800-228-8201


    10 Colvin Avenue, Albany, NY 12206

  7. Brave Kids bravekids.org

    Website has information on children’s illnesses and disabilities, message boards for parents & kids and a resource guide that you can search by zip code.

  8. 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

  9. 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 ,

  10. 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