The evolving role of patient advocates in rare cancers

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The evolving role of patient advocates in rare cancers: opportunities and challenges
Ornella Gonzato and Alessandro Gronchi
Associazione Paola for Muskulo-Skeletal Tumors Onlus, Udine, Italy;
Department of Surgery, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
The role of Patient Advocates (PAs) has evolved over time. In general, it has expanded ranging from direct support to patients and families to research and public influence. Rare cancers are one of the areas in which PAs are assuming an increasingly more active role as partners with all others stake-
holders including healthcare professionals, academics, companies, regulators, and politicians. Because of the rarity, patients face additional difficulties.
Research challenges, access to new drugs and referral of patients to expert centers are the main intervention areas in order to address rare cancer patients needs and improve quality of care. This is the field where PAs role is carried out bringing the patients unique perspective on their conditions and the challenges they face in the rarity.

See the full article in the Expert Review of Pharmacoeconomics & Outcomes Research


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