Research News

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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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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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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Rydapt© Approved for Advanced Systemic Mastocytosis Variants!

Apr 28, 2017

The Mastocytosis Society, Inc. is very excited to announce to our mast cell disorder community that the Food and Drug Administration (FDA) has approved Novartis’ drug, Rydapt©, (midostaurin, previously referred to as PKC412) for the treatment of advanced forms of systemic mastocytosis [aggressive systemic mastocytosis (ASM), SM with an associated hematologic neoplasm (SM-AHN), formerly called […]

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