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: EMOTIONAL SUPPORT

  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. Bereaved Parents USA bereavedparentsusa.org

    Provides emotional support to families who have suffered the loss of a child.

    Contact Information

    If you are in crisis or just need to talk to someone about your loss please call:
    Lifeline at 800-273-8255

    Address

    Long Island NY Chapter Diana Roscigno Post Office Box 94 Bayville, New York 11709-0094 (516) 233-4848 2nd Wednesday of the month 7:30- 9:00pm Faith Lutheran Church 231 Jackson Avenue Syosset, NY 11791

  3. Chai Life Line chailifeline.org

    Since 1987, Chai Lifeline’s mission has been to restore the light of childhood to children whose innocence ended when life-threatening or lifelong illness was diagnosed. Through programs that address the emotional, social, and financial needs of seriously ill children, their families, and communities, Chai Lifeline restores normalcy to family life, and better enables families to withstand the crises and challenges of serious pediatric illness

    Contact Information

    212.465.1300
    877 CHAI LIFE

    Address

    Chai Lifeline New York/Greater Atlantic Region 151 West 30th Street Third Floor New York, NY 10001

  4. 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

    Address

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

  5. Compassionate Friends compassionatefriends.org

    When a child dies, at any age, the family suffers intense pain and may feel hopeless and isolated. The Compassionate Friends provides highly personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family

    Contact Information

    877.969.0010
    630.990.0010

    Address

    The Compassionate Friends, PO Box 3696, Oak Brook, IL 60522 (or) 1000 Jorie Blvd. Suite 140, Oak Brook, IL 60523

  6. 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

  7. Feeding matters feedingmatters.org

    Our goal is to become a comprehensive central repository of information and helpful resources to deal with this complex issue. The more you know, the better you will be able to make decisions that are suitable for you and your family. We hope that you will join our online community and share any helpful information you discover along the way. Together we will benefit by sharing information and providing support to those who care for a child with feeding struggles. Please note this is an open forum, and listing an item does not constitute endorsement by Feeding Matters.

    Contact Information

    623.242.5234

    Address

    Feeding Matters 7650 E. Redfield Rd. #C4 Scottsdale, AZ 85260

  8. Find a Friend

    Support groups for parents or caregivers of children with any chronic disease or special needs.  English group meets the 1st Tuesday of the month, from 12-1:30.  Spanish group meets the 2nd Monday of the month, from 12-1:30.

    Contact Information

    718-741-2223

    Address

    The Children's Hospital at Montefiore, 3415 Bainbridge Avenue, Family Learning Place, Bronx, NY 10467

  9. 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
    FACESinfo@nyumc.org

    Address

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

  10. Flushing Hospital Mental Health Services flushinghospital.org

    The Mental Health Outpatient Clinic services include diagnostic assessment, individual psychotherapy, group psychotherapy, medication management, family counseling, and marital counseling. Services are provided for children, adolescents, adults and seniors. Accepts Medicaid and private insurance

    Contact Information

    For a prompt appointment or more information, please call the Intake Coordinator at 718-670-5316 or the clinic at 718-670-5562

    Address

    4500 Parsons Blvd Flushing NY 11355