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Because we want to be sure that our visitors find the most relevant resources, we've listed these organizations in order of relevancy from most specifically relevant to most generally relevant to the topic of this page.
Fanconi Anemia Research Fund, Inc.
Contact: (888) 326-2664 or (541) 687-4658 (International)
Population served: Patients with Fanconi anemia and healthcare professionals worldwide
The fund's mission is to find effective treatments and to provide education and support services.
- Provides disease and treatment information
- Offers a family support program
- Provides a referral service to treatment and testing centers
- Publishes a handbook on standards for clinical care in English and Spanish
- Publishes a handbook for families on patient care
- Publishes three newsletters
Aplastic Anemia & MDS International Foundation Inc. (AA&MDSIF)
Contact: (800) 747-2820
Population served: People diagnosed with aplastic anemia, myelodysplastic syndromes (MDS) or paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow diseases.
AA&MDSIF's mission is to provide information and support to patients, families and caregivers coping with aplastic anemia, MDS, PNH, and related bone marrow failure diseases.
AA&MDSIF offers a variety of programs and services:
- Information for patients: free educational materials, print and electronic newsletters, Online Learning Center, and Patient and Family Conferences
- Patient support services: personalized support from Patient Educators, and Peer Support Network, clinical trials information, and local support groups
- Research: funds research to find better treatments and cures for aplastic anemia, MDS and PNH; advocates for increased federal funding of bone marrow failure disease research
- Current information for medical professionals about these diseases, their diagnosis and treatment