Sharing a Patient Perspective at Deciphera Pharmaceuticals

Apr 17, 2018

On February 28, 2018, in honor of Rare Disease Day, The Mastocytosis Society provided the employees at Deciphera Pharmaceuticals with the opportunity to hear first-hand from a patient perspective what it’s like to live with systemic mastocytosis. Janice Chiappione, a local patient living with systemic mastocytosis, visited the company and spoke to the team about […]

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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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Online Survey for Individuals with Systemic Mastocytosis

Feb 12, 2018

A big thank you to those who have expressed an interest in this survey! Enrollment is now completely full. (This notice was accidentally backdated as published on February 12, 2018, but was actually posted February 21, 2018. We apologize for any confusion.)

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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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Summer 2017 Chronicles, Letter and Updates from the Chair

Jul 01, 2017

Summer Greetings! Here within TMS, there is so much going on that I hardly know where to start. The new website has been launched and running now for over four months, and we are delighted with the results thanks to the design team of Russell Hirshon and Shannon Flynn at Ministers of Design. We have […]

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Mast Cell Disorder Challenges Meetings and US Network Update

Jun 02, 2017

Over the last few years, The Mastocytosis Society, Inc. (TMS) has been hosting small ancillary meetings during the annual gatherings of several physician specialty associations.  We now refer to these discussion groups as Mast Cell Disorder Challenges meetings because the general purpose has been to bring together specialist physicians, drug company representatives and members of […]

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Mylan Provides Update on EpiPen® Recall

Apr 04, 2017

Mylan N.V. (NASDAQ, TASE: MYL) today announced that Meridian Medical Technologies, a Pfizer company and Mylan’s manufacturing partner for EpiPen® Auto-Injector, has expanded a voluntary recall of select lots of EpiPen (epinephrine injection, USP) and EpiPen Jr® (epinephrine injection, USP) Auto-Injectors to now include additional lots distributed in the U.S. and other markets in consultation […]

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Patient Advocacy

Apr 01, 2017

National Organization for Rare Disorders, Inc. (NORD) 6/22/2017 “Today, the Senate #HealthcareBill was released. After reviewing the discussion draft of the Better Care Reconciliation Act of 2017 (BCRA), NORD finds that it fails to meet several of NORD’s Principles for Healthcare Reform (http://bit.ly/2sZhUtU). As the bill is currently written, we are urging both Republican and […]

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BOD Meeting Minutes

Apr 01, 2017


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2015 Coast to coast run for awareness

Aug 01, 2016

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