Aplastic Anemia & Myelodysplasia Association of Canada

Contact: info@aamac.ca
Population served: Supports patients and caregivers across the country who are living with aplastic anemia, myelodysplastic syndrome (also called MDS or myelodysplasia) and paroxysmal nocturnal hemoglobinuria (PNH).
Other language(s) : French
Mission:

In 1987, the concerned parent of a child with aplastic anemia founded the Aplastic Anemia Family Association of Ontario. One of the very first goals of the Association was to advocate for the formation of a national bone marrow donor registry in Canada. Today, the Aplastic Anemia and Myelodysplasia Association of Canada is a federally incorporated and registered national charity with the ambitious goal of providing a seamless support network for every Canadian patient, family member, friend and concerned healthcare provider dealing with aplastic anemia, myelodysplasia or PNH.

Aplastic Anemia & MDS International Foundation

Contact: 800-747-2820
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

Resources include:

• Free educational materials, the latest medical and treatment information, and clinical trials information
• Online Learning Center, with webcasts, interviews with experts, interactive learning modules, live webinars
• Guidance for living well with bone marrow failure diseases
• Support Connection enabling patients to talk with trained patient volunteers who share treatment experiences and provide emotional support
• Communities of Hope: Volunteer-led local groups connecting patient and families for peer support and information exchange
• Matthew Debono Memorial Scholarship Fund for students who are U.S. residents age 35 and under, diagnosed with a rare bone marrow failure disease (aplastic anemia, MDS or PNH) and who meet all other eligibility guidelines.

Fanconi Anemia Research Fund

Contact: 888-326-2664
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