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: EMOTIONAL SUPPORT
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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
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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 800-273-8255Address
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
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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 LIFEAddress
Chai Lifeline New York/Greater Atlantic Region 151 West 30th Street Third Floor New York, NY 10001
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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) 933-9044Cleftline 1-800-24-CLEFT (800-242-5338
Address
1504 East Franklin Street, Suite 102 Chapel Hill, NC 27514-2820 USA ,
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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
630.990.0010Address
The Compassionate Friends, PO Box 3696, Oak Brook, IL 60522 (or) 1000 Jorie Blvd. Suite 140, Oak Brook, IL 60523
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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 -
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
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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
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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.orgAddress
223 East 34th Street (between 2nd and 3rd Avenues) New York, NY 10016
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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