Aplastic Anemia & Myelodysplasia Association of Canada
Contact: info@aamac.caPopulation 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) : FrenchMission:
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: 800-747-2820Population 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: 888-326-2664Population 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