living with disease
2025 ASH Updates: Higher Risk MDS
Secondary AML
Transplantation in patients with lower-risk MDS: a prospective phase 2 trial based on donor availability
Abstract Allogeneic hematopoietic stem cell transplantation (HSCT) remains the only potential curative therapy for myelodysplastic syndrome (MDS), recommended in higher risk disease according to the International Prognostic Scoring System (IPSS). We conducted a phase 2…
Health-related quality of life and symptom profile of patients with BCR::ABL1-negative myeloproliferative neoplasms: Real-world evidence from the GIMEMA-PROPHECY observational study
Abstract Health-related quality of life (HRQoL) of patients with myeloproliferative neoplasms (MPNs) may be impaired across several domains. In this multicenter observational study, we evaluated HRQoL and symptoms in a cohort of MPN patients with validated measures, including the…
Impact of Mutational Landscape and Burden on RBC Transfusion Response in Patients With Lower-Risk Myelodysplastic Syndromes (LR-MDS) in the COMMANDS Study
ABSTRACT The COMMANDS trial established luspatercept as a first-line treatment for anemia in transfusion-dependent lower-risk (LR) myelodysplastic syndromes (MDS). Here we report red blood cell (RBC) transfusion response analysis based on somatic mutations profile and disease…
2026 Seattle Patient and Family Conference
Patients 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 c
First Responder Stunned by Severe Aplastic Anemia Diagnosis: Greg's Story
In November 2016, at just 36 years old, Greg was diagnosed with severe aplastic anemia aplastic anemia:
Rusfertide Continues to Show Strong Results for Polycythemia Vera
Rusfertide sustained hematocrit control and sharply reduced phlebotomy need through week 52 in PV, showing durable efficacy and a consistent safety profile. Treatment with the hepcidin mimetic rusfertide continued to demonstrate sustained hematocrit control below 45% and high…
Mutant p53 promotes clonal hematopoiesis through generating a chronic inflammatory microenvironment
Aged individuals with somatic TP53 mutations manifest clonal hematopoiesis (CH) and are at high risk of developing myeloid neoplasms. However, the underlying mechanisms are not fully understood. Here we show that inflammatory stress confers a competitive advantage to p53 mutant…
