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2019 RESEARCH AWARD: TMS Partners with the AAAAI to Fund MCAS Research

Jul 18, 2019

In 2018, The Mastocytosis Society, Inc. (TMS) conducted a survey on Mast Cell Activation Syndrome (MCAS) with over 1700 respondents, which included participants with Mastocytosis or Hereditary Alpha-Tryptasemia (HAT) who may also have MCAS. Nearly 50% of survey respondents also reported physician-diagnosed Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS). Studies into the relationship between MCAS and dysautonomia […]

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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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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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Epi Pen Shortage

Sep 14, 2018

There is an ongoing shortage of epinephrine auto-injectors causing a crisis for mast cell disease patients attempting to fill their prescriptions. Our F.A.R.E. (Food Allergy Research & Education) colleagues have recommended the following steps: Visit http://healthmart.com/ to find an independent pharmacy. Ask your doctor for another brand and get trained on how to use it. […]

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TMS Mast Cell Activation Syndrome Initiatives Update

Jun 30, 2018

Good day, The Board and committee volunteers at TMS have been increasingly aware of frustrations arising in several areas, specifically with difficulty accessing care and for both recognition and validation of Mast Cell Activation Syndrome (MCAS). Please know that we share your concerns and these issues are foremost in our minds every day. We are […]

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