TMS Research Grant Offering

Sep 05, 2017

Research Grant-Request for Proposals on Pediatric Mastocytosis, including Related Disorders of Pediatric Mast Cell Activation: The Mastocytosis Society, Inc. (TMS) is pleased to announce that we are accepting research grant proposals for new or ongoing projects to study Pediatric Mastocytosis; the proposal may also address Pediatric Mast Cell Activation Syndrome in addition to Pediatric Mastocytosis. An […]

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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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The Stony Brook Chronic Illness Project-Patient Survey

Jul 01, 2017

DO YOU HAVE A CHRONIC ILLNESS? Scientists at Stony Brook University are conducting one of the largest, most important research studies ever undertaken to understand people’s experiences with chronic illness. The knowledge we gain from this study will help scientists and physicians to improve care and develop effective treatments. This anonymous, online questionnaire welcomes any […]

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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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The Poet’s Corner

Jun 29, 2017

Welcome to The Poet’s Corner We would like to give members of our mast cell disorder community an opportunity to share their poems on this site. If you would like to submit a poem, please email it to Ode to a Mast Cell Flare by Kathy Bell, 2016 My skin, it itches, my eyebrows, […]

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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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TMS Research Committee Activities

Jun 01, 2017

Below is a description of updates and progress made by 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. 2017 American Academy of Allergy Asthma and Immunology (AAAAI) Annual […]

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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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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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AWaRDS Study: Adults with Rare Disorders Support

Apr 03, 2017

In partnership with the National Organization for Rare Disorders, this will be the first large-scale study about the information and psychosocial support needs of people living with rare disorders. The purpose of this research study is to assess these needs, from the perspectives of people with a variety of rare disorders, to find similarities and differences across disorders. To ensure that results reflect the diversity of […]

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