Research News

Mast Cell Activation Syndrome Patient Survey: UPDATE

Jul 16, 2019

Mast Cell Activation Syndrome (MCAS) Patient Survey This survey was open from August 17 – 25, 2018. (THIS SURVEY IS CLOSED) UPDATE-7/16/19 Our MCAS Survey team was excited to have a new poster on the survey data accepted for presentation during the American Initiative in Mast Cell Diseases (AIM) Inaugural Investigator Meeting in May 2019 […]

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Pharmaceutical Company Patient Advisory Board: Advanced Systemic Mastocytosis

Jul 16, 2019

We at TMS strive to keep patients and families informed of opportunities that may help lead to improvements of quality of life for individuals affected by mast cell disease. With that in mind, we are sometimes able to offer opportunities to share your experiences related to your or a loved one’s disease. Immediately prior to […]

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Deciphera Pharmaceuticals Presents: Living with Systemic Mastocytosis (SM) WebEx

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 […]

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Informational Webcast on Avapritinib Clinical Trial Program in Systemic Mastocytosis (SM)

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 […]

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Patient Perceptions in Mast Cell Disorders

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 […]

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The Mastocytosis Society, Inc. 2010 Survey on Mast Cell Disorders UPDATE

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 […]

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The Mastocytosis Society, Inc. Announces Three Research Grants

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 […]

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Informational Webinar on Avapritinib Clinical Trial Program for Systemic Mastocytosis

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, […]

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ICD-10-CM Codes for Mast Cell Activation Syndrome and Mastocytosis- December 2017

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 […]

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Anaphylaxis threatens patients with systemic mastocytosis: A new study separates patients at high risk of anaphylaxis from those at low risk, a help in care

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 […]

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