Aplastic Anemia & MDS International Foundation
Contact: 800-747-2820 or help@aamds.orgPopulation served: Patients and families living with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases
Mission:
To support, connect and educate patients, caregivers and health professionals on bone marrow failure diseases worldwide
- Free educational materials: Information on research, treatment, and clinical trials
- Online Academy: Live webinars, webcasts, interviews with experts, and interactive learning modules
- Peer Support Network: Patients and caregivers can speak with trained patient volunteers who share treatment experiences and provide emotional support
- Community Connections: Volunteer-led regional support groups connecting patient and families
- 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.
- Educational Conferences: Our free conferences in cities around the country offer learning opportunities from leading medical experts, and the ability to connect directly with other patients and caregivers
- Travel Assistance: 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
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Find A Specialist: online search tool.
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