Patient Advisory Council

The AAMDSIF Patient Advisory Council (PAC) was created in 2008. Its purpose is to serve as a resource to the AAMDSIF staff in the development and review of patient education materials, programs and services. Members of the PAC include doctors, nurses, patient educators, patients and caregivers, all of whom have an interest in supporting the needs of people living with 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, PNH, or another 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. Review by the PAC provides patients and their families with the full confidence that they are receiving the most accurate, reliable and up-to-date information from the Foundation.

Members of the PAC include doctors, nurses, patient educators, patients and caregivers, all of whom have an interest in supporting the needs of people living with aplastic anemia, MDS, PNH, or another bone marrow failure disease. Review by the PAC provides patients and their families with the full confidence that they are receiving the most accurate, reliable and up-to-date information from the Foundation.

Patient Advisory Council members serve for a three year, renewable term. The current triennial appointments run from January 1, 2021 - December 31, 2023.  For more information about the Patient Advisory Council, please contact Leigh Clark, Director of Patient Services at clark@aamds.org or (301) 279-7202.