Find support, or help research
People near you who know what living with Thalassaemia is like, and ways you can help find better treatments.
Support groups in United States
- Cooley's Anemia FoundationUS nonprofit dedicated to helping people with thalassemia live longer, fuller lives through patient services, education and research.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
- Sickle Cell/Thalassemia Patients Network (SCTPN)Brooklyn, NY non-profit for people with sickle cell disease and thalassemia, offering advocacy, care coordination, support, referrals and community health workers.Brooklyn, NY
- 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 Thalassaemia.
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 Thalassaemia to compare with. Family and friends can help.