Archives

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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TMS Research Grant Awards: 2010 – 2017

Apr 02, 2017

The Mastocytosis Society, Inc. (TMS) awards grant funding for mastocytosis and mast cell activation syndrome (MCAS) research. Below is a list of our award recipients from recent years. This page will be updated as new publications or presentations related to TMS-funded research are identified. TMS thanks all of those listed below and previous awardees for […]

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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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Mast Cell Disorder Challenges Meetings and US Network Update

Apr 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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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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Helpful hints for living with the symptoms of mast cell disorders

Feb 02, 2017

“Proper self-care is not a luxury. It is as necessary to my disease management as my meds.” Helpful hints for living with the symptoms of mast cell disorders shared by patients living with these disorders: Overall Stability Being Prepared Medical Alert Jewelry and Devices Eating at home and outside of the home Bone Pain Fatigue […]

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