Find support, or help research
People near you who know what living with Myelodysplastic syndromes is like, and ways you can help find better treatments.
Support groups in United States
- National Cancer Institute – Cancer Information Service (CIS)NCI's contact center: information specialists answer cancer questions from patients, families and the public by phone, chat and email.All of United States
- American Cancer SocietyNationwide US nonprofit helping people who face cancer: research, patient services, early detection, treatment information and education, with a cancer helpline on its site.All of United States
- Aplastic Anemia and MDS International FoundationFoundation supporting patients and families with aplastic anemia, MDS and related bone marrow failure diseases.All of United States
- Cactus Cancer SocietyYoung adult cancer resource and community: support programs for people diagnosed with cancer as young adults.All of United States
- Cancer Hope NetworkNonprofit providing free one-on-one support to cancer patients and families by matching them with trained volunteers who have had a similar experience.All of United States
- Cancer NationSurvivor-led US cancer advocacy organization (formerly the National Coalition for Cancer Survivorship) working on quality cancer care and survivorship resources.All of United States
- Genetic and Rare Diseases Information CenterNIH information center (GARD) providing reliable information on genetic and rare diseases to patients and families via website and contact center.All of United States
- Imerman AngelsNonprofit offering free one-on-one cancer support and personalized mentoring that connects cancer fighters, survivors and caregivers with someone who has been there.All of United States
- MDS FoundationUS-based global nonprofit supporting patients with MDS and related diseases such as AML, their families and providers, with education, resources and support.All of United States
- Triage CancerNational nonprofit providing free education on legal and practical issues (insurance, employment, finances) for people with cancer and caregivers.All of United States
- National Organization for Rare DisordersUS national rare disease alliance of patient organizations: education, patient assistance programs, rare disease database and policy advocacy.All of United States
Contact details come from each group's own page and are checked every 3 months.
Help research
You do not need to join a trial to help. Below are the programmes we found in United States and how to reach them. You contact them yourself: Frontlight does not collect or pass on your details.
Give blood or tissue for researchResearchers use stored samples to find what causes Myelodysplastic syndromes.
Share your health dataA registry collects health data, without your name, so research teams can study many people at once.
Take part as a healthy volunteerStudies need people without Myelodysplastic syndromes to compare with. Family and friends can help.