title: Bladder Cancer Patient Advocacy: A Global Perspective.
abstract: Over the past 20 years, cancer patient advocacy groups have demonstrated that patient engagement in cancer care is essential to improving patient quality of life and outcomes. Bladder cancer patient advocacy only began 10 years ago in the United States, but is now expanding around the globe with non-profit organizations established in Canada, the United Kingdom and Italy, and efforts underway in Australia. These organizations, at different levels of maturity, are raising awareness of bladder cancer and providing essential information and resources to bladder cancer patients and their families. The patient advocacy organizations are also helping to advance research efforts by funding research proposals and facilitating research collaborations. Strong partnerships between these patient advocates and the bladder cancer medical community are essential to ensuringsustainability for these advocacy organizations, increasing funding to support advances in bladder cancer treatment, and improving patient outcomes.
authors.affiliation: President and co-Founder, Bladder Cancer Advocacy Network.
authors.forename: Diane Zipursky
authors.initials: DZ
authors.lastname: Quale
authors.affiliation: BCAN, SWOG, and NCI Patient Advocate.
authors.forename: Rick
authors.initials: R
authors.lastname: Bangs
authors.affiliation: Executive Director, Bladder Cancer Advocacy Network.
authors.forename: Monica
authors.initials: M
authors.lastname: Smith
authors.affiliation: Co-Founder and Chair, Bladder Cancer Canada.
authors.forename: David
authors.initials: D
authors.lastname: Guttman
authors.affiliation: Executive Director, Bladder Cancer Canada.
authors.forename: Tammy
authors.initials: T
authors.lastname: Northam
authors.affiliation: Founder and Director, Fight Bladder Cancer.
authors.forename: Andrew
authors.initials: A
authors.lastname: Winterbottom
authors.affiliation: Founder, Associazione PaLiNUro (Pazienti Liberi dalle Neoplasie Uroteliali); Department of Medical Oncology, Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy.
authors.forename: Andrea
authors.initials: A
authors.lastname: Necchi
authors.affiliation: Founder, Associazione PaLiNUro (Pazienti Liberi dalle Neoplasie Uroteliali).
authors.forename: Edoardo
authors.initials: E
authors.lastname: Fiorini
authors.affiliation: Founder, Bladder Cancer Awareness Australia.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Demkiw
keywords: Bladder Cancer Advocacy Network (BCAN); Bladder Cancer Australia (BCA); Bladder Cancer Canada (BCC); Bladder cancer; Fight Bladder Cancer; Pazienti Liberi dale Neoplasie Uroteliali (PaLiNUro); improved outcomes; partnership; patient advocacy; patient advocate; patient education; public awareness; quality of life