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Mastocytosis pp 267–286Cite as

International Support and Advocacy for Mast Cell Disease Patients and Caregivers

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Abstract

Support for patients, caregivers, and families affected by mast cell disease, from healthcare providers, patient associations collaborating on an international level, and online forums, can offer key mechanisms through which disease management can be successfully enhanced. Mast cell diseases, including mastocytosis and mast cell activation syndrome (MCAS), are rarely diagnosed maladies involving aberrant cellular growth, activation, and/or function, resulting in heterogeneous symptomatology and presentation. Seen by many specialties, especially allergy/immunology, dermatology, hematology, and gastroenterology, many healthcare providers may not recognize these diseases, necessitating enhanced advocacy by specialists, patients, caregivers, and patient associations. Internationally, patient associations have allied with medical partners, government, and industry entities to help facilitate the patient’s journey, with the goals of diminishing time to diagnosis, improving care, decreasing stress, and enhancing patient/caregiver quality of life.

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Acknowledgments

The authors thank Jan Hempstead, Rita Barlow, Cheri Smith, Gail Barbera, Rachel Zack, Laureen LaBrash, and Jonathan Lyons for their contributions to and assistance with the preparation of this manuscript.

Disclosures

SVJ: Research Chair, The Mastocytosis Society, Inc.; VMS: Chair, Board of Directors, The Mastocytosis Society, Inc.; JSH: Co-Chair, The UK Mastocytosis Support Group; LMT: President, Associação Brasileira de Mastocitose (Brazilian Mastocytosis Association); DWM: Chair, The Australasian Mastocytosis Society; MMM: Board Member, Asociación Española de Mastocitosis y Enfermedades Relacionadas (Spanish Association for Mastocytosis and Related Diseases); SL-R: Director/President, Mastocytosis Society Canada. The authors have no additional conflicts of interest related to the topics covered in this chapter.

Author information

Authors and Affiliations

  1. The Mastocytosis Society, Inc., Sterling, MA, USA

    Susan V. Jennings & Valerie M. Slee

  2. The UK Mastocytosis Support Group, Altofts, West Yorkshire, UK

    Jessica S. Hobart

  3. Associação Brasileira de Mastocitose, Volta Redonda, Rio de Janeiro, Brazil

    Lisa Morrison Thuler

  4. The Australasian Mastocytosis Society, Port Macquarie, NSW, Australia

    David W. Mayne

  5. Asociación Española de Mastocitosis y Enfermedades Relacionadas, Madrid, Spain

    Mercedes Martín-Martínez

  6. Mastocytosis Society Canada, Regina, SK, Canada

    Shawna L. Lechner-Rumpel

Authors
  1. Susan V. Jennings
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  2. Valerie M. Slee
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  3. Jessica S. Hobart
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  4. Lisa Morrison Thuler
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  5. David W. Mayne
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  6. Mercedes Martín-Martínez
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  7. Shawna L. Lechner-Rumpel
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Corresponding author

Correspondence to Susan V. Jennings .

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Editors and Affiliations

  1. Professor of Medicine, Division of Allergy and Clinical Immunology, University of Michigan, Ann Arbor, MI, USA

    Cem Akin

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Jennings, S.V. et al. (2020). International Support and Advocacy for Mast Cell Disease Patients and Caregivers. In: Akin, C. (eds) Mastocytosis. Springer, Cham. https://doi.org/10.1007/978-3-030-27820-5_16

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  • DOI: https://doi.org/10.1007/978-3-030-27820-5_16

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-27822-9

  • Online ISBN: 978-3-030-27820-5

  • eBook Packages: MedicineMedicine (R0)

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