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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Healing the Children htcne.org
A non-profit, non-partisan, volunteer organization, whose purpose is to help children throughout the world receive medical care unavailable to them due to a lack of medical and financial resources or health insurance. The Domestic Kids Program provides medical treatment and assistance to children in our local communities who are unable to get these services due to a lack of financial resources or medical insurance. They have arranged for children to receive services such as dental, medical, and surgical care, medical equipment, prescription medications, medical equipment, physical therapy, speech therapy, etc.
Contact Information
860-355-1828
Address
PO Box 129, 219 Kent Road, New Milford, CT, 06776
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Healthy Children healthychildren.org
Provide information/resources from the American Academy of Pediatrics. Includes information on chronic illnesses and how to help your child.
Contact Information
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Helping from Heaven-Lexi Kazian Foundation helpingfromheaven.org
Obtaining therapy equipment for your child with special needs is expensive. We are committed to helping families in need by providing grants three times per year. Grant application deadlines are April 30, August 31, and December 1
- Special needs bikes and tricycles
- Wheelchairs and other special needs equipment
- Adaptive bath and toileting equipment
- Car seats
- AFO’s
- iPads and computers
- Continuing education classes for therapists and parents regarding their child’s or client’s special need
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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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In Need of Diagnosis inod.org
IN NEED OF DIAGNOSIS, promotes changes in the medical system to increase the accuracy and timeliness of diagnosis and to be a resource center for those who suffer with illnesses that have eluded diagnosis
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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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Medline Plus nlm.nih.gov
National Institues of Health’s website for patients and their families and friends. Provides information about diseases, conditions, in language you can understand. You can also get links to the latest medical research on your topic or find out about clinical trials on a disease or condition. English/Spanish.
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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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National Institute of Health- Undiagnosed Program rarediseases.info.nih.gov
Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program (UDP), a clinical site of the Undiagnosed Diseases Network, pursues two goals:
- To provide answers to patients with mysterious conditions that have long eluded diagnosis
- To advance medical knowledge about rare and common diseases
A longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that are referred to this program, a very limited number will be invited to proceed in the study following careful application review by the program’s medical team. In general, it takes 8-12 weeks for the UDP to evaluate an application, and the waiting list for admission is 2-6 months.
Contact Information
For more information please call (866) 444-8806
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National Institutes of Health (NIH) nih.gov
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