WECAN Academy: Welcome to the WECAN Masterclass

1. Welcome to the
WECAN Academy
Ananda Plate, Myeloma Patients Europe, WECAN Chair

2.  ESO for handing over the ESO
Masterclass to WECAN and for ESO’s
continued support
 SPAEN for doing the same with
SmartStart
 Jan for the programme coordination
 WECAN members and
WECAN Programme Committee
 Michi for the logistics
 Speakers
 Sponsors
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Thank you for supporting the
WECAN Academy 2019!

3. What is WECAN?
 WECAN stands for Workgroup of European Cancer Patient
Advocacy Networks
 It is an informal workgroup which aims to act as a well-
coordinated cancer patient community towards all
stakeholders
 Increasing the level of collaboration, alignment and
mutual support between pan-European cancer patient
umbrella organisations
 It aims to share workload when contributing to different
stakeholder initiatives
 WECAN is based on the principle of subsidiarity
 Website: www.wecanadvocate.eu
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4. Who is part of WECAN?
1. Acute Leukemia Advocates
Network (ALAN)
2. Childhood Cancer
International (CCI, formerly
ICCCPO)
3. CML Advocates Network
4. Digestive Cancers Europe
5. EuropaDonna
6. EuropaUomo
7. European Men's Health
Forum
8. European Organisation for
Rare Diseases
9. European Waldenström's
Macroglobulinemia Network
10. International Brain Tumour
Alliance
11. International Kidney Cancer
Coalition
12. International
Neuroendoncrine Cancer
Alliance
13. Lung Cancer Europe
14. Lymphoma Coalition
15. MDS Alliance
16. Melanoma Patients Network
Europe
17. Myeloma Patients Europe
18. MPN Advocates Network
19. Pancreatic Cancer Europe
Network
20. Sarcoma Patients Euronet
Association (SPAEN)
21. Thyroid Cancer Alliance
22. Youth Cancer Europe
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5. What do we as patient
advocates do and why do
we need knowledge?

6. Patient advocacy operates on three levels
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Patient Support
• Inform, support, navigate
• Support patients and their families affected
by a dreadful disease to make the right
choices
Research
• Engage in meaningful research in
partnership with academia, industry and all
other relevant stakeholders
Health Policy
• Influence health policy, patient care
• Influence regulators and payors to make sure they
are basing their decisions on patient preferences
• Tell politicians to do policy for patients, not just
about patients

7. To achieve our goals, it is not enough to just be on a
mission...
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Evidence-based
advocacy
Advocating in a targeted, evidence-based,
well-educated and professional manner, and
measure impact and outcomes of what we do
is key to our success

8. The WECAN Academy is key to building that
knowledge and skills of the cancer patient community
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4 knowledge
pillars of
successful
patient
advocacy
- and why they
matter to you
10
Source:WECAN/MPNE(2019)
RESEARCH &
DATA
• How Research &
development works
• Patient-reported
outcomes
• Reading scientific
papers and interpreting
scientific data
• Evidence-based
advocacy
HEALTHCARE
SYSTEMS,
POLICY AND
ACCESS
• Access to treatment &
care
• Regulatory processes
• Navigating healthcare
system, differences,
EU vs country level
• Patients rights
• How industry works
ADVOCACY
TOOLS &
SKILLS
• Accessing information
• Project management
• Presentation skills
• NGO governance
• Financial management
• Managing volunteers
DISEASE &
CARE
• Prevention
• Understanding the
disease
• Therapeutic landscape
• Care pathways
• Living with the disease

9. 11
RESEARCH &
DATA
• How Research &
development works
• Patient-reported
outcomes
• Reading scientific
papers and interpreting
scientific data
• Evidence-based
advocacy
HEALTHCARE
SYSTEMS,
POLICY AND
ACCESS
• Access to treatment &
care
• Regulatory processes
• Navigating healthcare
system, differences,
EU vs country level
• Patients rights
• How industry works
ADVOCACY
TOOLS &
SKILLS
• Accessing information
• Project management
• Presentation skills
• NGO governance
• Financial management
• Managing volunteers
DISEASE &
CARE
• Prevention
• Understanding the
disease
• Therapeutic landscape
• Care pathways
• Living with the disease
The WECAN Academy is key to building that
knowledge and skills of the cancer patient community
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Medium level
Starters level
Expert level
4 knowledge
pillars of
successful
patient
advocacy
- and why they
matter to you

10.  105 patient advocates
( SmartStart,  Masterclass)
 22 speakers ()
 24 sessions
 26 countries
 22 European cancer patient
umbrella organisations
 12 sponsors ()
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The WECAN Academy is a
unique initiative and quite an
achievement for the
community!

11.  105 patient advocates
( SmartStart,  Masterclass)
 22 speakers ()
 24 sessions
 26 countries
 22 European cancer patient
umbrella organisations
 12 sponsors ()
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The WECAN Academy is a
unique initiative and quite an
achievement for the
community!
Increasing complexity
from day to day

12. Do not only focus on learning the theory presented at the
WECAN Academy – interact with people (the ones you don’t
know too) and above all….
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….get out of your
comfort zone!