Archives

Dysautonomia and Mastocytosis Webinar Dec 5th

Nov 20, 2017

Join Dysautonomia International and The Mastocytosis Society on December 5, 8-9pm EST for a free online webinar reviewing the relationship between autonomic dysfunction and misbehaving mast cells. Guest speakers, Dr. Andrew White, an immunologist at the Scripps Clinic in La Jolla, California and Dr. Jonathan Bernstein, an immunologist at University of Cincinnati, will review the […]

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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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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 secretary@tmsforacure.org. Ode to a Mast Cell Flare by Kathy Bell, 2016 My skin, it itches, my eyebrows, […]

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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

Preliminary AWaRDS Results: Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017;12(1):177. BACKGROUND: 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, […]

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Single Vaccines: A Safer Option for Children with Mastocytosis

Apr 02, 2017

A Review of Parente R, Pucino V, Magliacane D, Petraroli A, Loffredo S, Marone G, et al.  Evaluation of vaccination safety in children with mastocytosis. Pediatr Allergy Immunol. 2017 Feb; 28(1):93–95. Available from http://onlinelibrary.wiley.com/doi/10.1111/pai.12647/pdf1 Pediatric vaccination is a topic rife with controversy in today’s society. This topic is of unique relevance to patients with mast […]

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Mast Cell Disorder Patient Survey: March 23 – April 3, 2017 (Survey is Now Closed)

Apr 02, 2017

Perceptions of Patients with Mast Cell Disorders (Mastocytosis and Mast Cell Activation Syndrome) and the Physicians Who Care for Them In collaboration with Georgetown University’s Biomedical Graduate School, The Mastocytosis Society (TMS) invited participation in a research study titled “Perceptions of Patients with Mast Cell Disorders (Mastocytosis and Mast Cell Activation Syndrome) and the Physicians […]

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April 2017 Kansas City Support Group Meeting

Apr 02, 2017

SUPPORT GROUPS …and what they can do for you! Have you ever thought about attending a support group meeting in your area?  Then you thought, I’m not sure about going because I’m not sure what to expect or people may not understand what I’m going through. . . . . . . . The Kansas […]

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