Archives

April 2017 Kansas City Support Group Meeting

Apr 18, 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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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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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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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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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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Long-Awaited Advance in Drug Development! Midostaurin Shows Efficacy in Advanced Systemic Mastocytosis (Implications for Our Disease Community)

Feb 02, 2017

Advanced forms of systemic mastocytosis (SM) are a set of hematologic neoplasms that includes aggressive systemic mastocytosis (ASM), SM with an associated hematologic neoplasm (SM-AHN), formerly called SM with an associated clonal hematologic non-mast cell lineage disease (SM-AHNMD),1 and mast cell leukemia (MCL), and have significantly poorer prognoses compared to indolent SM. Mutations in the […]

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Princess Among Soldiers

Feb 01, 2017

Article By Pam Hodge I have cried a million tears and asked why a million times, never to get the answer.  At times I have just held on because that is all I could do. I thought at times our family would crumble because of lack of support. I have gone through the stages of […]

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Nancy Russell, DrPH, Steps Down as Co-Chair of the Research Committee

Feb 01, 2017

Nancy C. Russell, Dr. PH (Doctor of Public Health), who has served as Co-Chair of The Mastocytosis Society (TMS) Research Committee and of the TMS Patient Survey Committee, has retired from The Mastocytosis Society as of January 1, 2017 after nine years of extraordinary service to our members. This is Dr. Russell’s most recent retirement, […]

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