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

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. 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. 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. 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. A dedicated information page on ELLOK
website
National social media campaign - participation in the global
#bladdercancer campaign

6. Patient Experience Survey
to learn from bladder & kidney cancer patients & their carers what
matters most to them

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. 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. 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. Thank you for your attention!
•Website: www.ellok.org
•Μail: kathi.apostolidis@ellok.org,
info@ellok.org
•Facebook: Hellenic Cancer Federation
•Τwitter: @EllokGR