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EUROPA UOMO The European Prostate Cancer Patients Coalition L. Denis Monaco, October 6,2006
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Europa Uomo: Who? Coalition of 18 National/Regional Prostate Cancer Patient Organisations. Legal, non government (NGO). Membership:Legal registration Patient support activities Agree manifesto OCA, 2006
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Manifesto (I) 1.To find ways and means to promote quality of life for prostate cancer patients and their families. 2.To promote the dissemination and exchange of evidence-based information on prostate cancer. 3.To promote prostate awareness and appropriate diagnosis and prognosis. Keywords: QoL, Evidence-based, Awareness OCA 2006
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Manifesto (II) 4. To emphasise the need for appropriate early detection. 5. To campaign for provision of and access to optimum treatment. 6. To ensure quality supportive care throughout and after treatment. 7.To promote multiprofessional quality care and appropriate medical infrastructure. Keywords: Early detection, optimal treatment, quality & multiprofessional care OCA, 2006
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Manifesto (III) 8.To acknowledge good clinical practice and promote its development. 9.To ensure that all men fully understand any proposed treatment options, including entry into clinical trials and their right to a second opinion. 10.To promote the advancement of prostate cancer research. Keywords: Good clinical practice, clinical trials, prostate cancer research OCA, 2006
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HOLISTIC MEANS: Optimal Medical Treatment We need information, education. Multiprofessional expertise and patience required. + Patient Centered Care We need psychological, emotional, social support / contact required. OCA, 2006
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The Lost Patient OCA, 2005 Contradictory information (doctor, media, friends) A lot of experts Unflexible guidelines Evidence Based Oncology Loss of personality in the process Statistics Outcomes not comparable ?
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Doctor/Patient Partnership Expectations:One shop info stop Clear choice and control Time to decide Outcomes and QoL Access to clinical trials Contact multiprofessional team Results:Informed, involved patient Prostate passport Patient satisfaction Patient defined QoL Discipline and political support Overall progress medical care OCA, 2006
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Europa Uomo Partnerships European School of Oncology 2004 International Consultation Urological Diseases2004 European Coalition Cancer Patients 2004 European Association of Urology 2005 International Prostate Health Council 2005 European Society Medical Oncologists2006 International Union Against Cancer2006 Global Prostate Health Coalition2006 OCA, 2006
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Our immediate request Support/create patient organisations Early diagnosis vs. overtreatment Carefull choice of primary treatment based on available prognostic factors Prevention metastatic disease Sustained hope of HRPC treatment OCA, 2006
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The survival of the Hippocratic oath and patient respect in the complexity of medical technology and multiprofessional care remain an integral part of our civilization and medical progress. OCA, 2006
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Europa Uomo Secretariat OCA Lange Gasthuisstraat 35-37 2000 Antwerp – BELGIUM Tel.: +32.3.223.53.54 Fax.: +32.3.223.53.52 E-mail: louis.denis@skynet.be Web: www.cancerworld.org/europauomolouis.denis@skynet.be www.cancerworld.org/europauomo
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