TAMS was one of four patient advocacy groups (PAGs) globally invited to present to The European Competence Network on Mastocytosis (ECNM) at their annual conference in September. The conference was a hybrid event held in Basil Switzerland and online. All PAGs attended virtually.
David Mayne and Kristin Sinclair presented on Perspectives of Australian Patient Support Groups with a focus on Addressing MCAS Diagnosis Concerns in Australia and globally, drawing on insights gained from our Facebook Support group, and the work done over the past two years on the Mast Cell Diseases in Practice and Research: Issues and Perspectives Raised by Patients and Their Recommendations to the Scientific Community and Beyond paper published in JACI:IP.
The Mast Cell Disease Society’s Valerie Slee and Susan Jennings spoke on Perspectives of US Patient Support Groups with a focus on Physician Education. The UK Mastocytosis Support Group’s Jess Hobart and Germany’s Mastocytosis Self-Support Network’s Nicole Hegmann spoke on Perspectives of European Patient Support Groups with a focus on Quality of Life.