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The Role of Brain Tumor Advocacy Groups

  • Neuro-Oncology (LE Abrey, Section Editor)
  • Published:
Current Neurology and Neuroscience Reports Aims and scope Submit manuscript

Abstract

The brain tumor community is a unique, underserved population that has not seen significant improvements in survival over the last four decades. In the search for effective treatments for brain tumors, nonprofit patient advocacy organizations identify and fill the gaps that the for-profit sector and the government have not addressed or cannot address. Although many articles have been written on the roles of patient advocacy groups in general, or in targeted areas such as clinical trial recruitment, none have looked at the brain tumor community specifically. This review looks at the literature on patient advocacy groups and provides specific examples of brain tumor advocacy organizations that offer these services. It examines the evolution of the role of these organizations over time, and how that has been reflected in the programs and services provided. This is a collaborative effort to highlight programs and services across multiple patient advocacy organizations.

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Compliance with Ethics Guidelines

Conflict of Interest

Carl Cadogan, Jonny Imerman, and Sarah Lindsell declare that they have no conflict of interest.

Michele Rhee is the Director of Program Initiatives at the National Brain Tumor Society.

Paulius Mui is the Executive/Program Assistant at the National Brain Tumor Society.

Lainey Titus Samant is the Associate Director of Public Policy at the National Brain Tumor Society.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

Author information

Authors and Affiliations

  1. 55 Chapel Street, Suite 200, Newton, MA, 02458, USA

    Michele Rhee, Paulius Mui & Lainey Titus Samant

  2. 620 Colborne Street, Suite 301, London, ON, N6B 3R9, Canada

    Carl Cadogan

  3. 205 W. Randolph, Floor 19, Chicago, IL, 60606, USA

    Jonny Imerman

  4. 61-65 Victoria Road, Farnborough, GU14 7PA, UK

    Sarah Lindsell

Authors
  1. Michele Rhee
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  2. Paulius Mui
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  3. Carl Cadogan
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  4. Jonny Imerman
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  5. Sarah Lindsell
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  6. Lainey Titus Samant
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Corresponding author

Correspondence to Michele Rhee.

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This article is part of the Topical Collection on Neuro-Oncology

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Rhee, M., Mui, P., Cadogan, C. et al. The Role of Brain Tumor Advocacy Groups. Curr Neurol Neurosci Rep 14, 442 (2014). https://doi.org/10.1007/s11910-014-0442-z

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  • DOI: https://doi.org/10.1007/s11910-014-0442-z

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