Mast Cell Diseases in Practice and Research: Issues and Perspectives Raised by Patients and Their Recommendations to the Scientific Community and Beyond

Susan V Jennings,Celeste C Finnerty, Jessica S Hobart,Mercedes Martín-Martínez, Kristin A Sinclair,Valerie M Slee,Julie Agopian,Cem Akin,Ivan Álvarez-Twose,Patrizia Bonadonna,Angela S Bowman,Knut Brockow,Horia Bumbea, Claudia de Haro,Jie Shen Fok,Karin Hartmann, Nicole Hegmann,Olivier Hermine, Monika Kalisiak,Constance H Katelaris, Jacqueline Kurz, Patrizia Marcis,David Mayne,David Mendoza,Alain Moussy, Genija Mudretzkyj, Nicoleta Nidelea Vaia,Marek Niedoszytko,Hanneke Oude Elberink,Alberto Orfao,Deepti H Radia, Sophie Rosenmeier, Eugenia Ribada, Waltraud Schinhofen,Juliana Schwaab,Frank Siebenhaar,Massimo Triggiani, Giuseppe Tripodo, Rocio Velazquez, Yvon Wielink,Friedrich Wimazal, Timo Yigit,Celia Zubrinich,Peter Valent

The Journal of Allergy and Clinical Immunology: In Practice（2022）

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摘要

Solutions vary across countries because situations differ, in particular regarding the existence of and access to centers of excellence and reference centers. Multifaceted mast cell activation syndrome barriers necessitate innovative approaches to improve access to appropriate care. The outcomes of this project should greatly support scientists and clinicians in their efforts to improve diagnosis, management, and treatment of patients with mastocytosis and mast cell activation disorders.

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关键词

Mastocytosis,Mast cell activation syndromes,Mast cell disorder/disease,Unmet needs,Patient perceptions and experiences,Triggers and symptoms,Anaphylaxis,Quality of life,Advocacy,Rare disease

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