The Aplastic Anemia and MDS International Foundation (AAMDSIF) and
Acceleron Pharma Inc. Announce Partnership Exploring the Mental Health Implications of Myelodysplastic Syndromes (MDS) Among Adult MDS Patients and Their Caregivers in the U.S. The Aplastic Anemia and MDS International Foundation (AAMDSIF) and Acceleron Pharma Inc. are partnering in an effort to better understand the mental health implications of myelodysplastic syndromes (MDS) among adult MDS patients and their caregivers in the U.S. An online survey will be implemented to identify the mental health needs of MDS patients, and the results will be used to develop actionable solutions to address these concerns. A public report on the findings will also be released in 2021. Myelodysplastic syndromes (MDS) represent a heterogeneous group of hematopoietic disorders, derived from an abnormal multipotent progenitor or stem cell and characterized by bone marrow failure, manifest as peripheral blood cytopenias involving one or more lineages. By definition, MDS are clonal disorders in which hematopoiesis is dominated by one or a small number of hematopoietic clones and are associated with a risk of clonal evolution, including progression to acute myeloid leukemia (AML). Patients diagnosed with lower-risk MDS may be treated with active surveillance or with supportive care, while those diagnosed with higher-risk MDS receive more active treatment. The vast majority of MDS research has focused on pathophysiology and therapeutic targets, with limited attention paid to the impact of the disease and treatment on patients’ quality of life. Symptoms and side effects such as fatigue and short-term memory loss can make daily life difficult, while concerns over financial burden and support resources can increase the psychosocial toll of MDS on both patients and caregivers. These chronic sources of anxiety and frustration may influence patient outcomes without some type of intervention. “At AAMDSIF we want to remind patients, their caregivers, and their medical professionals to focus on the total person and their community who are going through the journey of MDS. This means looking at their mental health as well as their physical health and how they impact each other,” said Janice Frey-Angel, CEO and Executive Director of AAMDSIF. “We are pleased to partner with Acceleron to help us develop our level of support we can provide to patients and their families.” “We’re pleased to be involved in this partnership with AAMDSIF,” said Habib Dable, President and Chief Executive Officer of Acceleron. “Patient well-being is our utmost priority, and that includes the physical and emotional health not only of the patients themselves but also of those in the support networks upon which they rely. We’re looking forward to the valuable insights that should emerge from this important initiative.”
AAMDSIF Contact:
Alice Houk, Senior Director, Health Professional Programs
Phone: (301) 279-7202 extension 101
Email: houk@aamds.org | 
