Mast Cell Diseases in Practice and Research: Issues and Perspectives Raised by Patients and Their Recommendations to the Scientific Community and Beyond
21st March 2025
Susan V. Jennings, Celeste C. Finnerty, Jessica S. Hobart, Mercedes Martín-Martínez, Kristin A. Sinclairf, Valerie M. Slee, Julie Agopian, Cem Akin, Ivan Álvarez-Twose, Patrizia Bonadonna, Angela S. Bowman, Knut Brockow, Horia Bumbea, Claudia de Haroo, Jie Shen Fok, Karin Hartmann, Nicole Hegmanns, Olivier Hermine, Monika Kalisiak, Constance H. Katelaris, Jacqueline Kurzs, Patrizia Marcis, David Mayne, David Mendoza, Alain Moussy, Genija Mudretzkyjz, Nicoleta Nidelea Vaiaaa, Marek Niedoszytko, Hanneke Oude Elberink, Alberto Orfao, Deepti H. Radia, Sophie Rosenmeierz ∙ Eugenia Ribadad ∙ Waltraud Schinhofenff ∙ Juliana Schwaab, Frank Siebenhaar, Massimo Triggiani, Giuseppe Tripodox, Rocio Velazquezo, Yvon Wielinkkk, Friedrich Wimazal, Timo Yigitff, Celia Zubrinich, Peter Valent (2022).This article focuses on the perspectives of those with mast cell diseases (namely mastocytosis and MCAS). It details a project aiming to expand our understanding of patient needs and to propose actions that address those needs. Issues reported include struggles relating to the rarity of mast cell diseases, the impact of the diseases on quality of life, the diagnostic process and the need for further research. It also identifies possible solutions to these challenges.
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