Medical Resources
This list covers some of the best-known organizations and websites offering medical information and support services for patients, families, and caregivers. No single list can cover all such resources. In addition to finding resources on the Internet, you can contact your local treatment center or find information at a public or university library.
If you have specific suggestions for additions, please contact us.
If there is something in particular you are looking for, we suggest that you post in the forums so other Marrowforums members can assist you.
Canadian Treatment Centers by Province (map)
Below are three major Canadian treatment centers for AA, MDS, and/or PNH, all in the Toronto area. All are designated as Centers of Excellence by The MDS Foundation. (See Designations and Registries below.)
See also our Treatment Center Map.
U.S. Treatment Centers by State (map)
Factors to consider when choosing a treatment center include the center's experience with your disease, your insurance coverage (you may be required to go to a particular center or get a referral from your primary care physician), your doctor's recommendations, and the center's location, staff, and facilities.
Below are major U.S. treatment centers for AA, MDS, PNH, and/or cancer in general. Some are designated as Comprehensive Cancer Centers by the National Cancer Institute and/or Centers of Excellence by The MDS Foundation (see Designations and Registries below).
See also our Treatment Center Map.
Designations and Registries
The NCI label NCI Comprehensive Cancer Center indicates a Comprehensive Cancer Center as designated by the National Cancer Insitute (NCI). These U.S. treatment centers have been found by the NCI to have "demonstrated reasonable depth and breadth of research activities in each of three major areas: laboratory, clinical, and population-based research, with substantial transdisciplinary research that bridges these scientific areas" and to have demonstrated "professional and public education and dissemination of clinical and public health advances into the community it serves." See NCI description and full history. You can download the NCI's list of Comprehensive Cancer Centers as a PDF file (28K) or a plain text file or read the description and list in Spanish.
The CoE label MDS Foundation Center of Excellence indicates an MDS Center of Excellence as designated by The MDS Foundation. Treatment centers apply to be listed, rather than being selected by independent reviewers. To be listed, an institution should have an established university or equivalent program, recognized expertise in MDS, ongoing research, clinical trials, peer-reviewed publications in the field, and agree to register patients in The MDS Foundation's International MDS Patient Registry.
An MDS Patient Registry maintained by the Slone Epidemiology Center at Boston University is open to new patients in the U.S., age 18 or older, who have been diagnosed with MDS in the last 3 months.