Research News

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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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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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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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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The Mastocytosis Society, Inc. Survey on Mast Cell Disorders UPDATE

Jan 01, 2017

In 2017, The Mastocytosis Society, Inc. (TMS) anticipates submitting a second report of our Mast Cell Disorder Patient Survey results for publication. A poster summarizing these second results, The Mastocytosis Society Survey on Mast Cell Disorders: Part 2-Clinical Experiences, Co-Morbidities, Diet, Families and Opinions, was presented during the 2015 American Academy of Allergy, Asthma and […]

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