As We Began
Since 1983, the AAMDSIF has been the resource of choice for those affected by aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… , MDS, and PNH. Guided by the bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… community, the Foundation developed cutting-edge programs for patient support, education, and research. With the commitment of patients, friends, family, and business, AAMDSIF has expanded reach, services, and scientific investigation.
As We Grew
Arming the bone marrow failure disease community with accurate information is the beginning of meeting their needs. Connecting patients and families with others just like them provides the emotional support that no one else can give. When those affected by these rare diseases reach AAMDSIF, they find the confidence essential to endure treatment, advocate for themselves, and find ways to support one another during this journey.
In addition to support services, AAMDSIF provides education for patients and families. Known for in-person conferences, the Foundation adapted to present virtual or hybrid conferences and instituted all-virtual support groups when the pandemic required isolation of vulnerable patients. In addition, the Foundation continues to deliver condition-specific webinars, available worldwide, featuring the best minds in the field. The recordings of these educational events provide enduring content via the website, encouraging worldwide participation.
Recent Initiatives
New initiatives have been launched in the past five years. The Global PNH Patient Registry will yield patient perspectives that will inform new research. Toolkits with medical information and disease management resources are now available for aplastic anemia, MDS, and PNH. The new conference for Health Professionals, “Providing Equitable and Inclusive Care to Patients with Bone Marrow Failure Conditions,” will be repeated and expanded. AAMDSIF launched the GVHD Interactive Provider Network, which offers educational discussions for the professional participants.
Advancing the Research
When the Foundation was established, treatments for aplastic anemia, MDS, and PNH were nonexistent or in their infancy. Now with the 100th research grant distributed, AAMDSIF initiated novel research to bring new data and therapies. The Foundation continues to lead with its unique Biennial Bone Marrow Failure Scientific Symposium as well, bringing together the brightest minds and cutting-edge research to advance the science.
Into the Future
As AAMDSIF begins its fifth decade, the need for answers, support, and hope remains. AAMDSIF will be on the forefront of scientific breakthroughs, but as importantly, on the cutting edge of patient-focused programming services. 40 years ago, the founders could not have foreseen the rise of internet-based services, much less a website that provides connection to hundreds of thousands of visitors each year. We will strive together in the next 40 years with all who help this effort to deliver patient support, education, and research.