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.
Interactive Treatment Center Map (identify North American treatment centers geographically)
Foundations and Associations
Aplastic Anaemia Trust (U.K.)
Canadian Association of PNH Patients (funded by Alexion Pharmaceutical Company)
Iron Disorders Institute (not specific to bone marrow failure diseases)
Patient Resources and Support Groups
Fisher House (for military families)
MDS UK Patient Support Group (U.K.)
MDS-Vietnam (for Vietnam Veterans with MDS)
Patient Services Incorporated (PSI, insurance assistance)
Hope Lodge (American Cancer Society)
Talk Blood Cancer (Australia)
Bone Marrow and Stem Cell Transplantation
Blood & Marrow Transplant Information Network (BMTInfoNet)
Medical Information and Clinical Trials
ClinicalTrials.gov (a service of the U.S. National Institutes of Health)
Patient Financial Aid and Advocacy
Novartis - Exjade/EPASS Reimbursement System (application PDF)
Medical Flight Programs
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.
All Children's Hospital (Pediatric)
Beth Israel Comprehensive Cancer Center (formerly St. Vincent's Comprehensive Cancer Center) (see also their MDS page)
St. Jude Children's Research Hospital (Pediatric)
Seattle Children's Hospital (Pediatric)
Designations and Registries
The NCI label 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 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.