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There are a number of organizations dedicated to providing information and support for patients with bone marrow failure disorders, and for their caregivers, or conducting research in these areas.

American Society of Hematology patient site – provides information on blood disorders and clinical trials, links to find a local hematologist, and an advocacy toolkit

Aplastic Anemia & MDS International Foundation

Diamond Blackfan Anemia Foundation

Dyskeratosis Congenita Outreach, Inc.

Fanconi Anemia Research Fund

The Leukemia & Lymphoma Society

Marrowforums – discussion forums for patients with bone marrow failure disorders including aplastic anemia, myelodysplastic syndromes and paroxysmal nocturnal hemoglobinuria

MPN Research Foundation – provides information and support for patients with primary myelofibrosis, essential thrombocythemia, and polycythemia vera

National Heart, Lung and Blood Institute – blood diseases information

The PNH Research and Support Foundation

An extensive list of additional resources for patients, cancer survivors, and caregivers is available through our cancer survivorship site


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Our Cancer: for caregivers

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