Feb 14, 2018
The Mastocytosis Society, Inc. Announces Three Research Grants (Sterling, MA, February 14, 2018) The Mastocytosis Society, Inc. (TMS) has awarded three research grants totaling $170,000 to support research in Pediatric Mastocytosis, including Related Disorders of Pediatric Mast Cell Activation. “While initially, we thought we would only be able to support one research study, thanks to […]
Feb 13, 2018
On Thursday, January 25th, 2018, The Mastocytosis Society in collaboration with Blueprint Medicines hosted an informational webcast for the SM patient community about avapritinib (formerly known as BLU-285), an investigational medicine for people with advanced SM. During the webcast, Dr. Andy Boral, Chief Medical Officer of Blueprint Medicines, shared an update on the avapritinib program, […]
Dec 01, 2017
ICD-10-CM codes for Mast Cell Activation Syndrome (MCAS) were implemented in October 2016 and revised codes for Mastocytosis were implemented in October 2017! (Please visit https://www.cdc.gov/nchs/icd/icd10cm.htm for more details.) Article by: Valerie M. Slee, RN, BSN, TMS Chair Susan Jennings, PhD, TMS Research Chair ICD-10-CM Code Proposals for Mast Cell Disorders-Background Back as far as […]
Jul 01, 2017
DO YOU HAVE A CHRONIC ILLNESS? Scientists at Stony Brook University are conducting one of the largest, most important research studies ever undertaken to understand people’s experiences with chronic illness. The knowledge we gain from this study will help scientists and physicians to improve care and develop effective treatments. This anonymous, online questionnaire welcomes any […]
Jun 30, 2017
Anaphylaxis is a sudden, severe hypersensitivity reaction resulting from excessive release of mast cell mediators. Symptoms and signs often involve the skin. A fatal reaction may occur when the airways become obstructed or the cardiovascular system fails. Mastocytosis is characterized by an accumulation of clonal mast cells in the skin and/or internal organs. Cutaneous mastocytosis […]
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
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, from the perspectives of people with a variety of rare disorders, to find similarities and differences across disorders. To ensure that results reflect the diversity of […]
Apr 02, 2017
A Review of Parente R, Pucino V, Magliacane D, Petraroli A, Loffredo S, Marone G, et al. Evaluation of vaccination safety in children with mastocytosis. Pediatr Allergy Immunol. 2017 Feb; 28(1):93–95. Available from http://onlinelibrary.wiley.com/doi/10.1111/pai.12647/pdf1 Pediatric vaccination is a topic rife with controversy in today’s society. This topic is of unique relevance to patients with mast […]
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 […]
Jan 01, 2017
In 2017, The Mastocytosis Society, Inc. (TMS) anticipates submitting a second report of our Mast Cell Disorder Patient Survey results for publication. A poster summarizing these second results, The Mastocytosis Society Survey on Mast Cell Disorders: Part 2-Clinical Experiences, Co-Morbidities, Diet, Families and Opinions, was presented during the 2015 American Academy of Allergy, Asthma and […]