Authors: Michele Rhee Paulius Mui Carl Cadogan Jonny Imerman Sarah Lindsell Lainey Titus Samant
Publish Date: 2014/03/07
Volume: 14, Issue: 4, Pages: 442-
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 forprofit 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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