Research Updates

One of TMS’ Research Committee’s most recent efforts was the publication of patient-identified needs for mast cell activation syndrome and separately for mastocytosis, with recommendations for implementing change: “Mast Cell Diseases in Practice and Research: Issues and Perspectives Raised by Patients and Their Recommendations to the Scientific Community and Beyond” in The Journal of Allergy and Clinical Immunology: In Practice, an official publication of the American Academy of Allergy, Asthma, & Immunology (AAAAI).

This exciting project was undertaken with our international partners The UK Mastocytosis Support Group, Asociación Españolade Mastocitosis y Enfermedades Relacionadas (ADEM), The Australasian Mastocytosis Society (TAMS), the European Competence Network on Mastocytosis (ECNM), and the American Initiative in Mast Cell Diseases (AIM). The data were initially presented at the 2020 ECNM Annual Meeting and are now published in a Special Issue of JACI: In Practice dedicated to Mast Cell Diseases. We thank the patients and caregivers who participated in this effort, the patient organizations that support them, and the physicians with whom we collaborated to bring this publication to fruition. The journal has made the article freely available to all (“Open Access”). We also presented the findings at the 2022 national TMS Patient & Caregiver Conference. You can watch the video below: