title: The role of brain tumor advocacy groups.
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.
authors.affiliation: , 55 Chapel Street, Suite 200, Newton, MA, 02458, USA, mrhee@braintumor.org.
authors.forename: Michele
authors.initials: M
authors.lastname: Rhee
authors.forename: Paulius
authors.initials: P
authors.lastname: Mui
authors.forename: Carl
authors.initials: C
authors.lastname: Cadogan
authors.forename: Jonny
authors.initials: J
authors.lastname: Imerman
authors.forename: Sarah
authors.initials: S
authors.lastname: Lindsell
authors.forename: Lainey Titus
authors.initials: LT
authors.lastname: Samant
mesh_terms: D001932:Brain Neoplasms / Q000191:economics / Q000523:psychology / Q000628:therapy; D017028:Caregivers; D006801:Humans; D010344:Patient Advocacy; D010353:Patient Education as Topic; D011640:Public Policy; D012106:Research; D012657:Self-Help Groups