Useful Links
Other AA/MDS/PNH Associations
- Aplastic Anemia & MDS International Foundation
- The Myelodysplastic Syndromes Foundation
- Marrowforums™ is a group of discussion forums for people affected by bone marrow failure diseases. At Marrowforums, patients and their families, friends, and caregivers assist and support each other through discussion and sharing. The diseases are rare, but the patients and those who care about them are not alone!
- MDS Alliance
- The Aplastic Anaemia Trust
- MDS Patient Message Board
- MDS UK Patient Support Group
- PNH On-Line Support Group
- PNH Research and Support Foundation
- Canadian PNH Network
- Canadian Association of PNH Patients
- The Leukemia & Lymphoma Society of Canada
Canadian Cancer Society - Community Services Locator
Programs for Patients, Pediatric
Other Marrow Failure/Blood Disorder Links
Blood-Related Links
Research Links
- Canadian Cancer Trials GroupAs well as the public page under clinical trials there is a patients & family page with information about how clinical trials work.
- Canadian Cancer TrialsCanadian Cancer Trials is created by the Canadian Partnership Against Cancer and its partners to help patients learn about clinical trials for cancer. MDS (myelodysplastic syndrome) trials such as the MDS-CAN trial are listed, as well as those for AA (aplastic anemia) and PNH (paroxysmal nocturnal hemoglobinuria).
- National Cancer Institute (US) - Clinical TrialsSearchable database of clinical trials in the US
- US National Library of Medicine - Clinical TrialsClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world.
- The Leukemia & Lymphoma Society of Canada - Clinical TrialsUnderstanding Clinical Trials for Blood Cancers
- The Leukemia & Lymphoma Society of Canada - Clinical TrialsGeneral information about clinical trials
- PubMed DatabasePubMed is a service of the U.S. National Library of Medicine that includes over 17 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s.
- Current OncologySearchable database of clinical trials in the US
- Canadian Cancer Survivor NetworkResources for Drug Pricing Policy in Canada
- Canadian Cancer Survivor NetworkDrug Pricing Policy Learning Events for Patient Organizations
The American Journal of Managed Care Videos - A panel of experts discuss the complex nature of myelodysplastic syndromes and concurrent subclassifications.
- AJMC - Oral Therapy Considerations for the Management of Myelodysplastic Syndromes (MDS) - Episode 1Understanding the Nature of Myelodysplastic Syndromes
- AJMC - Oral Therapy Considerations for the Management of Myelodysplastic Syndromes (MDS) - Episode 2Approaching Patient and Caregiver Education on Myelodysplastic Syndromes
- AJMC - Oral Therapy Considerations for the Management of Myelodysplastic Syndromes (MDS) - Episode 3Identifying Myelodysplastic Syndromes Subtypes
- AJMC - Oral Therapy Considerations for the Management of Myelodysplastic Syndromes (MDS) - Episode 4Educating Patients and Caregivers on MDS Subtypes
- AJMC - Oral Therapy Considerations for the Management of Myelodysplastic Syndromes (MDS) - Episode 5Gaps in the Diagnosis and Treatment of Myelodysplastic Syndromes