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 […]
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 […]
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. […]
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 […]
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
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 […]
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 […]
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 […]
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. […]
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 […]