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Barcelona bladder meeting

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2017 Activities of Hellenic Cancer Federation in Urogenital Cancer and Plans for 2018 - Bladder and Kidney Cancer

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Barcelona bladder meeting

  1. 1. Οur Activities in Uro-Genital Cancer in 2017 Plans for 2018 Bladder Cancer Activities Bladder Cancer Forum – Barcelona – October 10-11, 2017 Kathi Apostolidis Vice President ECPC-European Cancer Patient Coalition President Exec. Committee Hellenic Cancer Federation – ELL.O.K.
  2. 2. Who is ELL.O.K.- Hellenic Cancer Federation - The “umbrella” organization for cancer patient organizations in Greece - Cancer policy and patient rights advocacy - 27 patient organizations membership from all over Greece - Full members are volunteer cancer patient organisations legally established in Greece, run & governed by a board with cancer patient majority - ELL.O.K. member organizations cover all cancers - ELL.O.K. & its members are members of ECPC and other European cancer organizations e.g. ESGO, Europa Donna, Europa Colon
  3. 3. WHY AN ACTION ON URO-GENITAL CANCER? • Bladder cancer: 4th cause of cancer incidence in Greece •Kidney cancer: low incidence – 2012: 1,094 new cases diagnosed in Greece but 604 deaths from renal cancer AIM: • Raise awareness • Educate patients and families, the public • Propose measures to improve cancer care delivery, rehabilitation & survivorship WHY: • Little known, does not have the attention it requires • Life threatening diseases
  4. 4. Bladder Cancer Activities 2017 • Make part of the 2017 Action Plan presented in February at our Annual General Meeting • ELLOK participated in the 2017 Bladder Cancer Patient Group Roundtable Meeting-London •Developed detailed action plan for UG cancer (bladder & kidney cancer). •Established an expert group of physicians, an ELLOK representative and patient representatives • In collaboration with our members we work for the establishment of a patients’ WGUG • In May 2017 we participated in the bladder cancer awareness campaign hosted by ECPC
  5. 5. A dedicated information page on ELLOK website National social media campaign - participation in the global #bladdercancer campaign
  6. 6. Patient Experience Survey to learn from bladder & kidney cancer patients & their carers what matters most to them
  7. 7. Goal: • Raise awareness & present basic facts • Listen to the patients & families • Shed light on living with bladder and kidney cancer • Call to Action for improved cancer care, rehabilitation & survivorship care Audience: • ELLOK members • Urogenital cancer patients • Physicians and Nurses • Healthcare reporters • Cancer care policy makers Uro-Genital Cancer Awareness Conference
  8. 8. Key Learnings so far…Way Ahead…. • Action for UG cancer proves much needed • Time of essence for affected patients to get involved • Rehabilitation and return to work & normal life are key issues • Fragmented cancer care is a problem • MD cancer care sounds good on paper but very difficult to establish • Importance of resources for effective advocacy, dedication of patient advocates not sufficient • Cancer & health policy makers lack understanding of the burden of cancer on patients and families • Financial toxicity of bladder cancer
  9. 9. Plans for 2018 Main Challenges: • Build on work done in 2017, seek best practices in UG cancer • Add prostate cancer to the already featured bladder and kidney cancer • Secure the necessary resources to materialize our plan • Complete/publish the UG Patient Guides for Bladder, Kidney and Prostate Cancer • Activate the WGUG-network it with other European UG patient groups-send a few patients to international meetings • Introduce the Patient Guides in the Urology Clinics • Spread the awareness campaign in other cities beyond Athens
  10. 10. Thank you for your attention! •Website: www.ellok.org •Μail: kathi.apostolidis@ellok.org, info@ellok.org •Facebook: Hellenic Cancer Federation •Τwitter: @EllokGR

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