Aplastic Anemia & MDS International Foundation
Contact: 800-747-2820 or help@aamds.orgPopulation 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 myelodysplastic syndromes (MDS), aplastic anemia, paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases.
- Free educational materials: The latest medical and treatment information, and clinical trials information
- Online Academy: Webcasts, interviews with experts, interactive learning modules, live webinars
- Guidance for living well with bone marrow failure diseases
- Peer Support Network: Enables patients to talk with trained patient volunteers who share treatment experiences and provide emotional support
- Communities Connections : Volunteer-led local groups connecting patient and families for peer support and information exchange
- Online Community: MarrowCommunity.org is an online community for patients with bone marrow failure and their families. Members can connect with others, share resources, learn about upcoming events and have their questions answered.
- Travel Assistance: AAMDSIF seeks to ensure that patients can see a specialist to seek the best course of treatment. Financial aid may be available for U.S.-based patients with demonstrated financial need.
Fanconi Anemia Research Fund
Contact: 888-326-2664Population 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