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: MEDICAL SUPPORT
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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
718-966-2593
Address
CSF, Inc. 29 Crest Loop Staten Island, NY 10312
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Childrens Charity Fund childrenscharityfund.org
Many families do not have the funds for Health Insurance, and in some cases the Insurance do not cover Durable Medical Equipment:
- Purchases medical equipment for handicapped and disabled children.
- Provides educational grants to help children further there education.
- Children’s Charity Fund, Inc helps children all around the United States
Contact Information
Toll-Free: 800-643-5787
Office: 941-925-9689
Email: ccf21c@aol.com
Address
Children's Charity Fund, Inc. 6623 Superior Ave Ste B Sarasota, FL 34231
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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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Different Needz differentneedz.com
DIFFERENTNEEDZ.COM is a web store that offers special needs families a one-stop shop to buy and sell their gently used medical and special needs equipment and adaptive toys. Our goal is to unify a community that has not been properly served by product suppliers or other resale sites.
Contact Information
contactus@differentneedz.com
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Disabled Children’s Relief Fund dcrf.com
The Disabled Children’s Relief Fund is a non-profit organization that provides small grants to parents of disabled children and other organizations who provide services for disabled children. Grants are to be used for education, services and equipment to help improve the quality of life of a disabled child.
Eligible parents of children with cerebral palsy, muscular dystrophy, spastic quadriplegia, encephalitis, rheumatoid arthritis, spina bifida, Down’s Syndrome, and other disabilities are eligible to receive assistance.
Contact Information
516-377-1605
Address
PO Box 89, Freeport, NY 11520
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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
212-677-8550
Address
65 Broadway, ste 505, New York, NY 10006
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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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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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First Hand Foundation firsthandfoundation.org
First Hand is a not-for-profit organization that provides funding for individual children (up to age 18) with health-related needs when insurance and other financial resources have been exhausted. Funding may be available for clinical procedures, medicine, therapy, prosthesis; equipment, such as wheelchairs, assistive technology equipment, care devices, or hearing aids; and vehicle modifications. Lodging, food, gas, parking and transportation for families of seriously ill children who must travel during treatment are also among the needs which might be covered.
Contact Information
816-201-1569
Address
2800 Rockcreek Parkway, Kansas City, MO 64117
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Genetic Alliance geneticalliance.org
An organization devoted to promoting optimum healthcare for people suffering from genetic disorders. Network of 1000 disease-specific advocacy organizations. Resources include online genetic testing database, provides information about support groups, clinical descriptions, treatments, research, insurance issues.
Contact Information
www.diseaseinfosearch.org