Apr 28, 2017
The Mastocytosis Society, Inc. is very excited to announce to our mast cell disorder community that the Food and Drug Administration (FDA) has approved Novartis’ drug, Rydapt©, (midostaurin, previously referred to as PKC412) for the treatment of advanced forms of systemic mastocytosis [aggressive systemic mastocytosis (ASM), SM with an associated hematologic neoplasm (SM-AHN), formerly called […]
Apr 03, 2017
Preliminary AWaRDS Results: Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017;12(1):177. BACKGROUND: In partnership with the National Organization for Rare Disorders, this will be the first large-scale study about the information and psychosocial support needs of people living with rare disorders. The purpose of this research study is to assess these needs, […]
Apr 02, 2017
Perceptions of Patients with Mast Cell Disorders (Mastocytosis and Mast Cell Activation Syndrome) and the Physicians Who Care for Them In collaboration with Georgetown University’s Biomedical Graduate School, The Mastocytosis Society (TMS) invited participation in a research study titled “Perceptions of Patients with Mast Cell Disorders (Mastocytosis and Mast Cell Activation Syndrome) and the Physicians […]