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: Genetic testing
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.
Works on behalf of the prevention of birth defects and provides support to families affected by birth defects (prematurity, heart effects, genetic diseases)
New York Chapter: 515 Madison Avenue, 20th Floor, New York, NY 10022
Nation’s leading medical research agency. Has different institutes for specific disease areas.
Clinical Trials: database of research studies for new therapies, to test new ways of using known treatments or to find out more about a disorder. To learn about clinical trials or to find a clinical trial that your child might be able to participate in, visit: www.ClinicalTrials.gov
National Institute of Neurological Disease (NINDS): leading supporter of biomedical research on disorders of the brain and nervous system. www.ninds.nih.gov
Office of Rare Diseases (NORD): provides information on specific rare diseases, patient advocacy groups, research studies. www.raredisease.info.nih.gov
Helps people (all ages) with rare orphan diseases through information, programs of education, advocacy, research, and service.
55 Kenosia Avenue, Danbury, CT 06810
Program ensures that individuals with genetic disorders have access to genetic services (i.e diagnostic, counseling and preventive services). All services are available whether or not the patient is able to pay for them.
Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. Our mission is to eliminate the challenges of rare disease by building awareness, and providing critical connections and resources to positively impact affected patients and families.
T: 949-248-RARE (7273
Global Genes World Headquarters 28 Argonaut, Suite 150 Aliso Viejo, CA 92656 )