Since 1983, the 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… and MDS International Foundation has served the aplastic anemia, myelodysplastic disease syndromes (MDS), paroxysmal nocturnal hemoglobinuria paroxysmal nocturnal hemoglobinuria: (par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the urine. Hemoglobin is the red part of red blood cells. A… (PNH), and related 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… disease communities. In pursuit of our mission to provide answers, support, and hope, we provide programs and resources that empower patients and their families, advance research that speeds the search for new treatments and potential cures, promote high-quality care by educating healthcare providers, and ensure our patients’ voices are heard through awareness and advocacy.
Some of our many programs and resources include:
Conferences, webinars, and publications that give essential information to patients and families who struggle to find accessible language about their disease and its treatments.
Support groups and peer networks that give real-life emotional support to those who are in the fight for their lives.
Competitive research grants that invest in those who pursue deeper understanding of and treatment for rare bone marrow failure diseases.
Medical and scientific education that equip health professionals with cutting-edge knowledge to provide personalized treatment to their patients, and
Advocating for research and treatment funding, giving more patients a better chance of long-term survival.
Raising awareness of bone marrow failure diseases to ensure that our patients’ voices are heard and our communities’ needs are met.