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2nd Masterclass in Cancer Patient Advocacy

Not eligible for ESCO credits

24.06.2016  -  26.06.2016

Milan, Italy


Patient advocacy


Steering Committee:
R. Deniel Ihlen (Lung Cancer Europe) - J. Geissler (CML Advocates Network) - G. Henning (Europa Colon) - S. Knox (Europa Donna - the European Breast Cancer Coalition) - K. Mastris (Europa Uomo - the European Prostate Cancer Coalition) - K. Oliver (International Brain Tumour Alliance) - B. Ryll (Melanoma Patient Network Europe) - K. van Rassel (Lymphoma Coalition) - M. Wartenberg (Sarcoma Patients Euronet and International Kidney Cancer Coalition)

Scientific Coordinator: K. Redmond

Dear Masterclass participant,

It is a pleasure to welcome you to the 2nd ESO Masterclass in Cancer Patient Advocacy and hope that you find the course both valuable and enjoyable. ESO has decided to organise this course because of the limited opportunities available for highly experienced cancer patient advocacy leaders to enhance their understanding of key cancer policy issues and develop their advocacy skills. Over the past few months we have worked with a small steering committee consisting of advocacy leaders representing a number of European cancer patient organisations to develop a programme that we think will be both interesting and of value to participants. Therefore we are really pleased that most of the cancer patient organisations active at a European or international level have decided to send delegates to the Masterclass.

Participating organisations include:>

•Active Citizenship Network
•CML Advocates Network/Leukemia Patient Advocates Foundation
•ECPC - European Cancer Patient Coalition
•Europa Donna - the European Breast Cancer Coalition
•Europa Uomo - the European Prostate Cancer Coalition
•EURORDIS - Rare Disease Europe
•IBTA - International Brain Tumour Alliance
•IKCC - International Kidney Cancer Coalition
•INCA - International Neuroendocrine Cancer Alliance
•Lymphoma Coalition Europe
•LuCE - Lung Cancer Europe
•MDS Alliance
•Myeloma Patients Europe
•Melanoma Patient Network Europe
•Pancreatic Cancer Action
•SPAEN - Sarcoma Patients EuroNet
•Thyroid Cancer Alliance

We also have an excellent faculty with experienced speakers on diverse topics from organisational governance to generating patient evidence. The Masterclass format is
intended to provide plenty of opportunity for interaction and sharing of experiences. Given the calibre of participants attending the meeting we are confident that there will be as much value gained from sharing experiences and networking as will be gained during the formal session. We are grateful to the ESO’s Sharing Progress in Cancer Care partners who have decided to support this meeting and we are happy to welcome a representative from each of these supporting companies to this meeting as an observer.   

You are kindly request to provide us with feedback on the programme. You can do this by completing the online evaluation form.

With best wishes
Kathy Redmond

The Masterclass target audience will include senior representatives of EU cancer patient networks as well as a small number of future leaders.  There will be a mentorship programme for future leaders with one senior leader mentoring a future leader throughout the masterclass. 

• NGO governance
• Effective leadership
• Smoothing the transition from small to large organisations
• Developing skills in dealing with the media
• Becoming more impactful at the EU level
• Securing a seat at the policy table
• Generating patient evidence

General information

European School of Oncology (ESO)
Via Turati 29
20121 Milan

Rita De Martini (rdemartini@eso.net)
Elena Fiore (efiore@eso.net)
Daniela Mengato (dmengato@eso.net)




All course materials will be provided electronically through an event dedicated website that will be available till 30 August 2016. On this website you will find the Masterclass programme together with all available materials from faculty (CVs, presentations, etc.). This website will be updated along the way and new material will be uploaded as soon as provided by the faculty.

In order to receive your certificate of attendance by e-mail we kindly ask that you complete and send the online evaluation questionnaire


ESO is grateful to the following companies for supporting this event:
BMS, ELI Lilly, Genomic Health, Helsinn, Merck, Novartis Oncology, Pfizer, Roche.






Faculty list

K. Benn
, Europa Donna - European Breast Cancer Coalition, IT

T. Bereczky, EAT&G - European AIDS Treatment Group, HU
R. Deniel Ihlen, Lung Cancer Europe (LuCE), NO
J. Geissler, CML Advocates Network/Leukemia Patient Advocates Foundation, DE
G. Henning, EuropaColon, UK
S. Knox, Europa Donna - European Breast Cancer Coalition, IT
Y. Le Cam, EURORDIS, Rare Disease Europe, FR
K. Mastris, Europa Uomo - European Prostate Cancer Coalition, UK
P. McIntyre, Cancer World magazine, UK
M. Militaru, ECPC - European Cancer Patient Coalition, BE
E. Nicod, LSE Health, London School of Economics and Political Science, London, UK
K. Oliver, IBTA - International Brain Tumour Alliance, UK
A. Plate, MPE, Myeloma Patients Europe, BE
K. Redmond, Masterclass Co-ordinator, CH
B. Ryll, Melanoma Patient Network Europe, SE
D. Taylor, The UCL School of Pharmacy, London, UK
C. Thalheim, EMSP - European Multiple Sclerosis Platform, BE
I. van den Neucker, ECCO - European Cancer Organisation, BE
A. Wagstaff, Cancer World Magazine, UK
M. Wartenberg, SPAEN and IKCC, DE
M. Wyatt, Consultant in Non-profit Governance, US


24 June

 13:30   Welcome
F. Peccatori, Scientific Director, European School of Oncology, IT
Porta Romana meeting room
    Introduction to the Masterclass
K. Redmond, Masterclass co-ordinator, CH

EFFECTIVE ORGANISATIONS                                                                   
Session co-ordinator: J. Geissler, DE
Porta Romana - Plenary
13:45   Building excellence in non-profit governance
M. Wyatt, Consultant in Non-profit Governance and author of “Handbook of NGO Governance”, USA
 15:30   Coffee break

 16:00   Meeting the challenge of leading a patient organisation
 18:00   End of session
19:30   Dinner at 5th floor - Attico Gourmet


 25 June

EFFECTIVE LEADERSHIP                                                                             
Session co-ordinator: S. Knox, IT

Concurrent Sessions

Workshops:Participants to rotate to different CEO - 35’ for presentation/discussion


W1: Porta Romana
W2: Porta Vigentina
W3: Ticinese 1+2
W4: Ticinese 3+4
8:30   Taking cancer patient organisations to the next level:
How to transition successfully from a start-up to a more mature organisation
Leadership workshops led by:
S. Knox, Europa Donna - the European Breast Cancer Coalition, IT
M. Militaru, European Cancer Patient Coalition, BE
A. Plate, Myeloma Patients Europe, BE
C. Thalheim, European MS Platform (EMSP), BE
  Coffee break
Session co-ordinator: K. Redmond, CH  

Porta Romana - Plenary
11:15   Developing skills in dealing with the media
A. Wagstaff and P. McIntyre, Cancer World Magazine, UK
13:15   Lunch
EFFECTIVE PATIENT ADVOCACY                                                            
Session co-ordinator: K. Oliver, UK
Porta Romana - Plenary
14:15   Securing a seat at the table
T. Bereczky, European AIDS Treatment Group (EATG), HU

  How EU policy is having an increasing impact on cancer care
I. van den Neucker, European Cancer Organisation (ECCO), BE
 15:30   Cancer patients’ influence on EU policy: from the first EU Breast Cancer
Resolution (2003) to the ECIBC
K. Benn, Europa Donna - The Europe, IT
 16:00   Coffee break
 16:30   Influencing health policy: Lessons to be learnt from other disease areas
(Excersise - 30’ discussion with participants rotating through cases)
Policy workshops led by:
T. Bereczky, EATG, HU
C. Thalheim, EMSP, BE
Concurrent Sessions
Exercise 1: Porta Romana
Exercise 2: Porta Vigentina
Exercise 3: Ticinese 1-2
 18:00   End of session
 19:30   Buffet Dinner - Gazebo Hotel Garden


 26 June


EVIDENCE-BASED ACTIVISM                                                                  
Session co-ordinator:B. Ryll, SE

Porta Romana - Plenary
8:30   Why do we need evidence-based activism in cancer patient advocacy?
B. Ryll, MPNE, SE
9:00   Health Technology Assessment and patient-generated evidence
E. Nicod, LSE, UK
9:45   What are the requirements for evidence-based activism?
10:15   Coffee break
10:45   Generating patient evidence: Learning from the experience of cancer patient advocacy groups

• K. Oliver, International Brain Tumour Alliance, UK
(Patients defining research priorities)
• B. Eberhardt, Das Lebenshaus, DE
(Patients contributing to the definition of QoL parameters)
• C. Roffiaen, Lymphoma Coalition Europe, IT
(Using patient surveys in advocacy)
• A. Stunt, Pancreatic Cancer Action, UK
(Using patient surveys in advocacy)
• T. Kolarova, International Neuroendocrine Tumor Alliance, BG
(Using patient surveys in advocacy)
Each presentation will be 10 minutes
There will be a panel discussion at the end of the session
CANCER OBSERVATORY                                                                         
Session co-ordinator: G. Henning, UK
Porta Romana - Plenary
12:00   Overcoming Cancer in the 21st Century (focus on the potential and challenges
associated with immunotherapy)
D. Taylor, UCL School of Pharmacy, UK
12:45   Closing
K. Redmond, Masterclass Co-ordinator, UK
13:00   Lunch followed by departures