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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
- Provides free educational materials, the latest medical and treatment information, and clinical trials information
- Offers guidance for living well with a bone marrow failure disease
- Online Learning Center offers webcasts, interviews with experts, interactive learning modules, live webinars
- Peer Support Network enables patients to talk with trained patient volunteers who can share treatment experiences and provide emotional support and understanding
- Matthew Debono Memorial Scholarship Fund for students who are U.S. residents under the age of 35, diagnosed with a rare bone marrow failure disease and meeting all eligibility guidelines
- Standing Up for Your Health to learn how to become a strong advocate for your best health care
- Communities of Hope are volunteer-led local groups, working together with AA&MDSIF staff, connecting patient and families to provide peer support and information exchange and to raise awareness and support for AA&MDSIF programs.
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