Apr 09, 2019
We at TMS strive to keep patients and families informed of opportunities that may help improve quality of life for individuals with systemic mastocytosis. With that in mind, we would like to inform you about an opportunity to share your experiences related to advanced systemic mastocytosis (SM) management and care. The pharmaceutical company, Blueprint […]
Mar 21, 2019
Mast Cell Activation Syndrome (MCAS) Patient Survey (THIS SURVEY IS CLOSED) This survey was open from Friday, August 17 through 10 pm (EDT) on Saturday, August 25, 2018. UPDATE-3/21/19 The Mastocytosis Society MCAS Survey team presented a poster on the survey data during the 2019 American Academy of Allergy, Asthma and Immunology (AAAAI) Annual Meeting […]
Oct 03, 2018
VIDEO NOW AVAILABLE ONLINE! On Tuesday, October 9, 2018, Deciphera Pharmaceuticals hosted a webinar for the Systemic Mastocytosis (SM) community about Living with Systemic Mastocytosis, and Deciphera Pharmaceuticals’ ongoing clinical trial of DCC-2618, an investigational drug being testing in people with smoldering and advanced forms of Systemic Mastocytosis. Oliver Rosen, MD, former Chief Medical Officer at […]
Sep 05, 2018
Informational Webcast on Avapritinib Clinical Trial Program in Systemic Mastocytosis (SM) On Tuesday, September 18, The Mastocytosis Society and Blueprint Medicines hosted a webinar for the SM community about avapritinib (also known as BLU-285), an investigational medicine for people with systemic mastocytosis (SM). Dr. Andy Boral, Chief Medical Officer at Blueprint Medicines, shared an update on […]
Aug 23, 2018
The Mastocytosis Society, Inc. (TMS) announces the publication of a collaborative article, Patient Perceptions in Mast Cell Disorders, in a special issue on Mastocytosis for Immunology and Allergy Clinics of North America, edited by Mariana Castells, MD, PhD: Jennings SV, Slee VM, Zack RM, Verstovsek S, George TI, Shi H, Lee P, Castells MC. Patient […]
Aug 23, 2018
The Mastocytosis Society, Inc. (TMS) is happy to announce the publication of a second report of results from our 2010 Mast Cell Disorder Patient Survey: Russell N, Jennings S, Jennings B, Slee V, Sterling L, Castells M, et al. The Mastocytosis Society Survey on Mast Cell Disorders: Part 2-Patient Clinical Experiences and Beyond. J Allergy […]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 […]
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 […]