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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Friends of Karen friendsofkaren.org
Provides emotional, financial and advocacy support for children with a life-threatening illness and their families.
Contact Information
212-308-1378
Address
116 East 16 Street, 5th Floor, New York, NY 10003
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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) 598-3789Address
Hydrocephalus Association 4340 East West Highway, Suite 905 Bethesda, MD 20814
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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
212-353-8353
Address
New York Chapter: 515 Madison Avenue, 20th Floor, New York, NY 10022
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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
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North Shore Family Guidance Center northshorechildguidance.org
Individual Therapy,Family Therapy,Group Therapy,Parent Education,Behavior Management Programs,
Family Support Programs,,Medical Management,Consultation ServicesContact Information
(516) 626-1971
Address
480 Old Westbury Road Roslyn Heights, NY 11577-2215
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Pediatric Brain Tumor Foundation curethekids.org
The Pediatric Brain Tumor Foundation is the world’s largest non-governmental funder of childhood brain tumor research. We serve the more than 28,000 children in the United States who are living with the diagnosis of a brain tumor. Our programs include free educational information about brain tumors, college scholarships, emotional support.
Contact Information
800-253-6530
Address
Pediatric Brain Tumor Foundation 302 Ridgefield Ct. Asheville, NC 28806
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Sacred Heart Church Bayside sacredheartbayside.net
Sr. Kathleen Masterson-Bereavement Counselor—group and individual
Contact Information
718-224-5695
Address
215-35 38th Ave. Bayside, NY 11361
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Sibling Support Project siblingsupport.org
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns
Contact Information
Local Sib ShopsNYC- Annette Spallino, LCSW,AHRC-NYC83 Maiden Lane, New York, NY 10038 , Phone: 2127802592 http://www.ahrcnyc.orgSibshop Description: Sibshops are held for several sessions during the year on Saturdays for children ages 5-15 who have brothers and sisters with developmental and medical disabilities.NYC- Rachel Mirkin,TBDNew York, NY ,Phone: 339-234-0295Sibshop Description: The NMD Sibshops group is geared toward children who have a brother or sister with Neuromuscular Disease. We are currently in the beginning stages of planning our Sibshops and we hope to hold our first event this Fall!Brooklyn Alyse AppelbaumOhel Bais Ezra,1563 49th st,Brooklyn, NY 11219 mapPhone: (718)6863497,http://www.ohelfamily.org -
Sibsplace southnassau.org
SIBSPlace was conceptualized to assist children who have brothers and sisters with cancer or another devastating illness. These children typically struggle with feelings of loss of control and consistency, isolation, jealousy, embarrassment, guilt, abandonment, sadness, fear and anxiety. At SIBSPlace, the children discover a safe environment where we balance attention to their emotional needs and much needed levity and diversions from stress.
Contact Information
(516) 374-3000
Address
1420 Broadway • Hewlett, NY 11557 •
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Spina Bifida Association spinabifidaassociation.org
Provides support, education, and research on behalf of spina bifida patients and their families.
Contact Information
(202) 944-3285
Address
Street Address: 1600 Wilson Blvd. Suite 800 Arlington, VA 22209 Please send all correspondence to: P.O. Box 17427 Arlington, VA 22216