Mast Cell Disorder Challenges Meetings and US Network Update

Jun 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 the TMS Research Committee to identify the primary challenges facing the mast cell disorder community in the United States and to explore possible actions that would address those challenges. A key conclusion from our initial Challenges meetings was that the establishment of a US Network for Mast Cell Disorders would be extremely helpful in overcoming many of the challenges faced by our disease community.

During these meetings, our US physicians have received significant support from a number of international specialists, who have shared their experiences of forming networks in their own countries and more broadly in Europe. TMS is committed to supporting activities that will lead to the formation of a US network under the leadership of Cem Akin, MD, PhD, and Jason Gotlib, MD, as Co-Chairs. The American Academy of Allergy, Asthma and Immunology (AAAAI) Mast Cell Disorder Committee has also agreed to participate in this effort. Below is a list of the Challenges meetings that TMS has hosted.

TMS thanks those who have contributed to our GENERAL FUND, as such donations have made our Mast Cell Disorder Challenges meetings and our efforts to help form a US Network for Mast Cell Disorders possible!

If you are a medical professional or an industry representative and would like to be placed on a contact list for the US Network, please email research@tmsforacure.org.

UPDATE-June 2017:

A small steering committee has been working on some initial planning for the network.  This committee would like to develop an American group, including all of North and South America, as opposed to restricting the group to the US, in order to be more inclusive. The current goal is to host an inaugural meeting in 2019, most likely on the West Coast of the US.

MAST CELL DISORDER CHALLENGES MEETINGS:

  • 2017 AAAAI Ancillary Meeting: TMS hosted our 7th Mast Cell Disorder Challenges meeting during the March 2017 AAAAI Annual Meeting. The meeting was moderated by Cem Akin, MD, PhD, and Melody Carter, MD. Dr. Akin gave a slide presentation on the European Competence Network on Mastocytosis (ECNM) (kindly shared by Peter Valent, MD, from his presentation during the 2016 ASH Challenges meeting noted below) to provide the group with a similar background as our hematologists received on a potential model for a US Mast Cell Disorder Network.
  • 2016 ASH Ancillary Meeting: TMS attended the 2016 ASH Annual Meeting in December and hosted our third ASH ancillary mast cell disorder meeting, bringing together specialist hematologists, drug company representatives and TMS for a discussion on Mast Cell Disorder Challenges, moderated by Jason Gotlib, MD. Peter Valent, MD, from the Medical University of Vienna, gave a presentation on the background, structure and activities of the ECNM. Meeting discussion related to solidifying support for creation of a US Network for Mast Cell Disorders and important considerations for this effort.
  • 2016 AAAAI Ancillary Meeting: During the March 2016 AAAAI Annual Meeting, TMS hosted another Challenges meeting with mast cell disorder-focused physicians and industry representatives attending the AAAAI meeting (Conquering Challenges in Mast Cell Disorder Therapy Development and Patient Care), moderated by Cem Akin, MD, PhD, and Melody Carter, MD. A committee was assembled to work on the establishment of a US Network for Mast Cell Disorders.
  • 2015 ASH Ancillary Meeting: TMS attended the 2015 ASH Annual Meeting in December and hosted our second ASH ancillary mast cell disorder meeting, bringing together specialist hematologists, drug company representatives and TMS for a discussion on Challenges in Developing Novel Mast Cell Disorder Therapies, moderated by Srdan Verstovsek, MD (Dr. Gotlib was able to attend for the end of discussions, but was delayed due to an unexpected conflicting meeting).
  • TMS Pre-ECNM Meeting: Susan Jennings, PhD, Research Committee, Co-Chair, attended the October 2015 European Competence Network on Mastocytosis (ECNM) Annual Meeting in Munich, Germany. Immediately prior to this meeting, TMS hosted a gathering of US physicians attending the ECNM meeting to discuss the possible formation of a US Network for Mast Cell Disorders. The idea was met with enthusiasm and Cem Akin, MD, PhD, and Jason Gotlib, MD, agreed to Co-Chair a committee to move forward with this initiative.
  • 2015 AAAAI Ancillary Meeting: TMS hosted a Primary Challenges for Mast Cell Disorder Treatment in the U.S. meeting during the February 2015 AAAAI Annual Meeting, bringing together specialist allergists, drug company representatives and members of the TMS Research Committee, moderated by Dean Metcalfe, MD, and Cem Akin, MD, PhD.
  • 2014 American Society of Hematology (ASH) Ancillary Meeting: TMS attended the 2014 ASH Annual Meeting (December 2014) and hosted our first ancillary mast cell disorder meeting, bringing together specialist hematologists, drug company representatives and TMS Research Committee members for a discussion on Challenges in Developing Novel Mast Cell Disorder Therapies, moderated by Srdan Verstovsek, MD. The group agreed to meet again during the following 2015 ASH Annual meeting, with Srdan Verstovsek, MD, and Jason Gotlib, MD, serving as meeting Co-Chairs.

By Susan Jennings, PhD, and Valerie Slee, RN, BSN

April 2017