Jun 17, 2020
The Mastocytosis Society, Inc. 2020 Patient Survey to Assess Impact of COVID-19 in Patients with Mast Cell Disease This survey will remain open for the foreseeable future You are invited to participate in a survey being conducted by Middle Tennessee State University (MTSU) researchers, in collaboration with The Mastocytosis Society, Inc. (TMS), designed to assess the […]
May 26, 2020
COVID-19 STATEMENT FROM THE MASTOCYTOSIS SOCIETY, INC. (TMS) AND PHYSICIANS FROM TMS MEDICIAL ADVISORY BOARD March 14, 2020 There have been many questions from patients affected by mast cell disease about the new coronavirus and if there are any precautions or changes in their medical management that should be undertaken. The Mastocytosis Society, Inc. (TMS) […]
Apr 03, 2020
Good day, We hope you are all well and staying safe by practicing social distancing. For those who may not know, the FDA has withdrawn all prescription, generic and over the counter (OTC) Zantac® (ranitidine) from the market effective April 1, 2020. https://www.fda.gov/news-events/press-announcements/fda-requests-removal-all-ranitidine-products-zantac-market We recognize that this has deeply affected many members of our mast […]
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 […]
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 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. […]
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 […]