Myelodysplastic Syndromes
Disclaimer: These resources are regularly reviewed to ensure that links still work correctly and the resources listed continue to be helpful to our visitors. If you find that a link isn't working or information is incorrect or if you'd like to have your own organization listed here, please email thedirectory@lls.org.
Because we want to be sure that our visitors find the most relevant resources, we've listed these organizations in order of relevancy from most specifically relevant to most generally relevant to the topic of this page.
Myelodysplastic Syndrome Foundation (MDS Foundation)
Contact: (800) 637-0839 (United States) or (609) 298-6746 (International)
Population served: People diagnosed with MDS, caregivers and healthcare professionals worldwide
MDS Foundation is devoted to the prevention, treatment and study of myelodysplastic syndromes.
- Provides treatment updates for patients and professionals
- Produces educational materials in many languages
Aplastic Anemia & MDS International Foundation (AA&MDSIF)
Contact: (800) 747-2820
Population served: People diagnosed with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases.
The mission of AA&MDSIF is to provide answers, support and hope to patients and families affected by these diseases worldwide.
AA&MDSIF offers a variety of programs and services:
- Information for patients: free educational materials, print and electronic newsletters, Online Learning Center, and Patient and Family Conferences
- Patient support services: personalized support from Patient Educators, a Peer Support Network, clinical trials information, and local support groups
- Research: funds research to find better treatments and cures for aplastic anemia, MDS and PNH; advocates for increased federal funding of bone marrow failure disease research
- Current information for medical professionals about these diseases, their diagnosis and treatment
National Cancer Institute (NCI)
Contact: (800) 422-6237
Population served: People with MDS worldwide
NCI, a component of the National Institutes of Health, is the federal government's principal agency for cancer research and training.
- Offers a call center
- Provides educational materials on MDS
- Conducts clinical trials at NCI laboratories and clinics
American Cancer Society (ACS)
Contact: (800) 227-2345
Population served: People with MDS worldwide
ACS assists patients and their caregivers with information about diseases, financial support, support groups, lodging and medical equipment. ACS has local chapters throughout the United States to provide assistance within the community.
- Provides a call center
- Provides information about MDS and includes topics such as diagnosis, causes and risk factors, treatments and other complementary follow-up information
- Provides links to other information such as what is new in research and a list of questions for the doctor
- Provides a printable disease guide in two formats, general and detailed
