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!
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
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.
For more information please call (866) 444-8806
Syndromes Without A Name USA (SWAN USA) offers support, information and advice to families of children living with a syndrome without a name. They are often described in many different ways such as; undiagnosed syndrome, unknown diagnosis, mystery diagnosis
Phone: (269) 692-2090 Toll Free (888) 880-7926
1745 Lorna Ln, Otsego MI 49078