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Aplastic Anemia & MDS International Foundation
Population served: Patients with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases and their families
Mission: To support patients and families worldwide living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases
- Free educational materials, the latest medical and treatment information, and clinical trials information
- Online Learning Center, with webcasts, interviews with experts, interactive learning modules, live webinars
- Guidance for living well with bone marrow failure diseases
- Support Connection enabling patients to talk with trained patient volunteers who share treatment experiences and provide emotional support
- Communities of Hope: Volunteer-led local groups connecting patient and families for peer support and information exchange
- Matthew Debono Memorial Scholarship Fund for students who are U.S. residents age 35 and under, diagnosed with a rare bone marrow failure disease (aplastic anemia, MDS or PNH) and who meet all other eligibility guidelines.
Fanconi Anemia Research Fund
Population served: Patients and families affected by Fanconi anemia
Mission: To find effective treatments and a cure for Fanconi anemia (FA) and to provide education and support services to affected families worldwide.
- Provides information on disease and treatment, including fact sheets and newsletter
- Offers information on clinical trials and testing centers internationally
- Manages online support groups and an international family support network
- Offers informational meetings and support services
- Sponsors research grants