Archives

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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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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BOD Meeting Minutes

Apr 01, 2017

   

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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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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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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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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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