Archives

Mast Cell Disorder Patient Survey: Open March 23 – April 3, 2017

Mar 23, 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) invites you to participate in a research study titled “Perceptions of Patients with Mast Cell Disorders (Mastocytosis and Mast Cell Activation Syndrome) 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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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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Rare Disease Month – Get involved and help Raise Awareness!

Feb 01, 2017

The definition of a rare disease differs by geographic region, and is defined as one that affects less than 200,000 people in the United States, and less than 1 in 2000 people in Europe. Currently, according to the National Organization for Rare Disorders (NORD), there are approximately 7000 rare diseases identified here in the US. […]

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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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ICD-10-CM Codes Update for Mast Cell Activation Syndrome and Mastocytosis- February 2017

Feb 01, 2017

In October 2016, ICD-10-CM codes for Mast Cell Activation Syndrome (MCAS) were implemented! (Please visit https://www.cdc.gov/nchs/icd/icd10cm.htm for more details.) Background In 2013 The Mastocytosis Society, Inc. (TMS), chaired by Valerie Slee, RN, BSN, and the American Academy of Allergy, Asthma and Immunology (AAAAI) Mast Cell Disorder (MCD) Committee, then chaired by Joseph Butterfield, MD, joined […]

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Catherine Weiler MD PhD

Jan 26, 2017

Dr. Catherine Weiler’s career has been dedicated to the treatment and study of allergy, immunology and mast cell disorders. She has been in the Division of Allergy at the Mayo Clinic in Rochester, MN since 1998, is currently the Co-Director of Mayo Program for Mast Cell and Eosinophilic Disorders and will be the incoming Chair […]

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2016 TMS Research Committee Activities

Jan 26, 2017

Below is a description of updates and progress made by The Mastocytosis Society (TMS) Research Committee during 2016. 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. TMS Research Committee Co-Chair Steps Down After 8 […]

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Wyatt the Warrior

Jan 26, 2017

As a mother, nothing can prepare you for moments of darkness. When you have a baby, you pray for all good things… all good moments. You expect light. One thing our youngest son Wyatt has taught us is that, despite all dark moments, light will always prevail. When Wyatt was born, I immediately knew something […]

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