Population served: Patients with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases and their families
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.
Population served: Patients and families affected by Fanconi anemia
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