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
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
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
AAKP 2701 N. Rocky Point Drive Suite 150 Tampa, FL 336
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
Offers a broad range of services for children, as young as 5, and throughout adulthood, who have an injury to the brain.
61-35 220th Street, Oakland Gardens, NY 11364
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!
Carmen Garcia - Email
Counties: Nassau & Suffolk
Ellie Bibawy, CBIS - Email
Counties: NYC Region (Bronx & Queens)
Jan Wollney, CBIS - Email
Counties: NYC Region (Brooklyn & Staten Island)
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.
Family Help Line: 1-800-444-6443 or 1-800-228-8201
10 Colvin Avenue, Albany, NY 12206
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.
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.
CSF, Inc. 29 Crest Loop Staten Island, NY 10312
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.
Cleftline 1-800-24-CLEFT (800-242-5338
1504 East Franklin Street, Suite 102 Chapel Hill, NC 27514-2820 USA ,
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.
65 Broadway, ste 505, New York, NY 10006