Archives

Pharmaceutical Company Patient Advisory Board: Advanced Systemic Mastocytosis

Apr 09, 2019

We at TMS strive to keep patients and families informed of opportunities that may help improve quality of life for individuals with systemic mastocytosis.   With that in mind, we would like to inform you about an opportunity to share your experiences related to advanced systemic mastocytosis (SM) management and care.  The pharmaceutical company, Blueprint […]

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Mast Cell Activation Syndrome Patient Survey: UPDATE

Mar 21, 2019

Mast Cell Activation Syndrome (MCAS) Patient Survey (THIS SURVEY IS CLOSED) This survey was open from Friday, August 17 through 10 pm (EDT) on Saturday, August 25, 2018. UPDATE-3/21/19 The Mastocytosis Society MCAS Survey team presented a poster on the survey data during the 2019 American Academy of Allergy, Asthma and Immunology (AAAAI) Annual Meeting […]

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TMS Research Committee Activities

Mar 21, 2019

Below is a description of updates and progress on projects related to The Mastocytosis Society (TMS) Research Committee. 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. Where applicable, click on titles for more information. […]

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Mast Cell Disorder Challenges Meetings and American Initiative in Mast Cell Diseases (AIM)

Mar 21, 2019

UPDATE-March 2019: Partnered with our TMS Patient/Caregiver Conference (May 1-3, 2019), TMS and the American Initiative in Mast Cell Diseases (AIM) Steering Committee have been preparing for the Inaugural AIM Physician/Investigator Conference (May 4-5, 2019).  Both conferences will be held in the San Francisco Bay Area. The intention of AIM is to develop a pan-American mast […]

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TMS Research Grant Offering

Feb 11, 2019

The 2019 TMS grant offering, presented in collaboration with the American Academy of Allergy, Asthma and Immunology (AAAAI), is now closed to new applications. The 2019 AAAAI/TMS Research Award in Mast Cell Disorders including Mastocytosis and/or Mast Cell Activation Syndrome Application Deadline: March 15, 2019  

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Cheyanne Perry

Feb 07, 2019

A woman stood amongst the rubble, solemnly watching as the emergency crew prepared her husband for transport. An officer contorted his face with a hardened expression, delivering the unfortunate news. It was assumed he fell asleep behind the wheel. The predicted outcome was grim. Despite numerous miscarriages, the young newlyweds were unknowingly parents the day […]

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Joseph Lentz

Jan 06, 2019

Joseph has been his parents hero from the very beginning. He was diagnosed with Diffuse Cutaneous Mastocytosis by 6 months old at the University of Minnesota Masonic Hospital. Now at the age of 6, he is at risk for extreme anaphylaxis at any time. We are also being challenged with GI and fatigue problems. JoJo […]

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Deciphera Pharmaceuticals Presents: Living with Systemic Mastocytosis (SM) WebEx

Oct 03, 2018

VIDEO NOW AVAILABLE ONLINE! On Tuesday, October 9, 2018, Deciphera Pharmaceuticals hosted a webinar for the Systemic Mastocytosis (SM) community about Living with Systemic Mastocytosis, and Deciphera Pharmaceuticals’ ongoing clinical trial of DCC-2618, an investigational drug being testing in people with smoldering and advanced forms of Systemic Mastocytosis. Oliver Rosen, MD, former Chief Medical Officer at […]

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Epi Pen Shortage

Sep 14, 2018

There is an ongoing shortage of epinephrine auto-injectors causing a crisis for mast cell disease patients attempting to fill their prescriptions. Our F.A.R.E. (Food Allergy Research & Education) colleagues have recommended the following steps: Visit http://healthmart.com/ to find an independent pharmacy. Ask your doctor for another brand and get trained on how to use it. […]

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Informational Webcast on Avapritinib Clinical Trial Program in Systemic Mastocytosis (SM)

Sep 05, 2018

 Informational Webcast on Avapritinib Clinical Trial Program in Systemic Mastocytosis (SM) On Tuesday, September 18, The Mastocytosis Society and Blueprint Medicines hosted a webinar for the SM community about avapritinib (also known as BLU-285), an investigational medicine for people with systemic mastocytosis (SM). Dr. Andy Boral, Chief Medical Officer at Blueprint Medicines, shared an update on […]

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