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 Research
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National Organization for Rare Diseases (NORD) rarediseases.org
Helps people (all ages) with rare orphan diseases through information, programs of education, advocacy, research, and service.
Contact Information
203-744-0100 800-999-6673
Address
55 Kenosia Avenue, Danbury, CT 06810
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Orphanet orpha.net
Information on rare diseases and new drug treatments from all over the world. Several languages.
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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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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