Archives

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

Oct 03, 2018

On Tuesday, October 9, 2018, at 11 AM, EDT, 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, Chief Medical Officer at Deciphera […]

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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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Mast Cell Activation Syndrome Patient Survey

Sep 13, 2018

Mast Cell Activation Syndrome (MCAS) Patient Survey SURVEY NOW CLOSED This survey was open from Friday, August 17 through 10 pm (EDT) on Saturday, August 25, 2018. UPDATE Wow, what a wonderful response! Thank you to everyone who took the time to complete this survey. We received lots of data to help with our presentation […]

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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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Mast Cell Disorder Challenges Meetings and American Network Update

Aug 23, 2018

UPDATE-August 2018: A steering committee has been working on planning for an Inaugural Meeting of the the American Initiative in Mast Cell Diseases (AIM).  An inaugural meeting of AIM is planned for May 2019 in the San Francisco Bay Area. The intention of AIM is to develop a pan-American mast cell disease network, including all […]

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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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TMS Research Committee Activities

Aug 23, 2018

Below is a description of updates and progress on projects related to The Mastocytosis Society (TMS) Research Committee. Major activities and initiatives are noted, but for a full list of activities in which the committee is involved, please see our Join the Research Committee section of this website. Where applicable, click on titles for more information. […]

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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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TMS Research Grant Offering

Jul 11, 2018

TMS is excited to announce the opening of a new grant offering, presented in collaboration with the American Academy of Allergy, Asthma and Immunology (AAAAI): The 2019 AAAAI/TMS Research Award in Mast Cell Disorders including Mastocytosis and/or Mast Cell Activation Syndrome Application Deadline: October 15, 2018 APPLICATION DETAILS

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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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