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Dear Platform Members, Dear All,

We are very pleased to present you the fifth quarterly newsletter of Pancreatic Cancer Europe.
You will find an update on the association’s activities, management, news and upcoming events.


  • Management of the association
    • PCE Annual General Meeting
    • Call for application: opening of a Board member seat
    • Save the Date! PCE AGM in Barcelona
  • Update on Pancreatic Cancer Europe‘s latest activities:
    • Pancreatic Cancer Academy (PACAW)
    • Launch of the PCE heatmap
    • PCE research roundtable during ESMO GI
  • More News from Pancreatic Cancer Europe
    • Nationwide studies in the Netherlands
  • Agenda

Pancreatic Cancer Europe is a European multi-stakeholder platform which aims at bringing together experts from all over Europe including academics, physicians, politicians, patient groups, journalists and industry. The platform was created in 2014 and became a legal entity in 2016. We work towards the development of targeted European and national policies on pancreatic cancer, to raise awareness of the condition at national level, to improve its diagnosis, to foster data collection, and to support research.

→ Should you need further information about our association, please do not hesitate to contact the Association’s Secretariat at


PCE held its platform tc on 13 march 2018

Several important decisions were taken during the TC:

  • Ali Stunt, Nuria Malats, Lydia Makaroff and Alfredo Carrato were candidates to re-election of the Board. Matthias Löhr, founding member of PCE, has decided to step down. The four candidates to their reelection as members of the board of PCE ASBL were unanimously reelected.


Board members (from left to right / top to bottom): Ali Stunt, Nuria Malats, Lydia Makaroff, Alfredo Carrato

  • The mandate of RPP Group, acting as delegate to the day-to-day management (i.e. Secretariat) of the association since its creation, has been renewed for another two years.
  • Members also approved the modification of the statute of the association, aiming to introduce the role of chairman of the board.

Call for Application: Opening of a 5th board member seat

As announced, and following the stepping down of one of our board members, the re-elected board has opened a call for application to become the 5th board member of the association. 

Only effective members of the association can apply.


Fifth board member wanted...

If you would like to run for a candidate, please send to the secretariat your application, containing: 

  • your resume / biographical presentation 
  • a cover letter explaining your motivation and why you would like to become a member of the board 

The deadline to submit your application is 30 April. Once collected by the Secretariat, the applications will be shared with all the members of the association. 

Board members are solicited to:

  • participate in monthly board TCs (1h), and two annual board meetings (June and November) 
  • take decisions on the broad orientations of the association 
  • take decisions on the allocation of the association's budget 
  • steer the discussions and activities of the association 
  • represent the association in external events or towards institutions when / where relevant 

The vote will take place during the next Annual General Meeting (21 June in Barcelona, Spain), 14.00 - 17.00.


The next General Assembly meeting of the Pancreatic Cancer Europe Platform, will be held on Thursday 21 June 2018 from 14.00 to 17.00 in Barcelona, Spain.

Logistic and travel details, as well as the precise location and the agenda of the meeting will be communicated in the next weeks.


PANCREATIC Cancer academy

The first Pancreatic Cancer Academy took place in Madrid on 22nd and 23rd March 2018.

Popped up during the Board meeting in Barcelona, the idea of the Pancreatic Cancer Academy was to bring together national members of the Platform, with advocacy, communication and strategy professionals. Set as a 2-day workshop the Academy allowed the participants to foster discussion and development of national advocacy plans on pancreatic cancer.

In spite of complicated logistics due to national strikes and airport shutdowns, a dozen members took part to the exchanges.

 We were glad to get inspiration from other countries on how to develop a sound and effective advocacy strategy at national level. With very different profiles of patient groups, the discussion were dynamic and enthusiasming !

Anna Rek from ECPC gave a special session dedicated to the benefits of social media management for a patient group, and Ali Stunt presented some of the advocacy levers Pancreatic Cancer Action brought together in 2017. 

This very first edition of the Pancreatic Cancer Advocacy Workshop was a success and we hope to be able to present the second edition next year!


The PCE Heatmap will be officially launched on 10th April. You can find it here for a first glance!

Conceived as a powerful tool to compare the pancreatic cancer patients’ situation in each European country, the heatmap provides information on awareness situation (prevalence, incidence, age profile etc.); on the national policy; on diagnosis; registries; state of research; state of treatments and available public health data on the disease.

Our heatmap features both European- and national-level information on pancreatic cancer

We are always looking for more data and information to enrich the heatmap. Should you want to add some data for your country, please contact directly the Secretariat. You can contribute anytime.


This year again, Pancreatic Cancer Europe proudly endorse ESMO-GI 2018, which will take place from 20th to 23rd June in Barcelona. This 20th edition is putting pancreatic cancer at the honour, and Pancreatic Cancer Europe is willing to promote awareness and information on this disease during the Congress.

This year, we have decided to hold a special roundtable on the research on liquid biopsy.

Liquid biopsy is becoming a hot topic also in pancreatic cancer as both incidence and mortality of this disease is increasing dramatically in Europe and USA. The earlier pancreatic cancer is diagnosed (primary tumors and progressions of the disease) the higher will be the benefit for the patients in terms of treatment options.

The objective of the roundtable will be to identify the barriers that pancreatic cancer poses in the implementation of liquid biopsy in patient management in comparison to other fields, as well as to discuss and prioritize the research gaps and needs to be covered. By comparing the achievements done with liquid biopsy in other cancer fields, we hope to learn and improve in that of pancreatic cancer.

The roundtable will be held during ESMO GI in Barcelona, on Friday 22nd June, from 9:30h to 12h.


nationwide studies in the netherlands

In the Netherlands, a unique, nationwide, multidisciplinary collaboration exists between all 18 pancreatic cancer centers: the Dutch Pancreatic Cancer Group (DPCG). Within the DPCG researchers are experienced with nationwide, multicenter studies. The Dutch Pancreatic Cancer Project (PACAP) is the largest nationwide collaborative outcomes registration and biobanking project on pancreatic and periampullary cancer, including the Dutch Pancreatic Cancer Audit (DPCA), Patient Reported Outcome Measures (PROMs), the Dutch Pancreas Biobank (PancreasParel), an online expert panel and the Netherlands Cancer Registry (NCR)

The Dutch Pancreas Biobank is the national biobank for pancreatic and periampullary diseases and enables high quality translational research towards more personalized medicine. In a recent publication (Strijker et al. Pancreas 2018) the success of this biobank is shown. Between February 2015 and March 2018 more than 750 patients have been included in 11 centers.

Based on the data of the first three PACAP years and current literature, ‘best practices’ have been identified. The PACAP-1 trial is established to implement these ‘best practices’ in all Dutch pancreatic cancer centers by a stepped-wedge cluster randomized controlled design. The aim of this trial is to improve survival and quality of life in all pancreatic cancer patients. The trial starts in May 2018.

A.E.J. Latenstein, PhD-candidate Dutch Pancreatic Cancer Group


20 - 23 June
ESMO GI, Barcelona

21 June, 10.00 - 13.00
Board meeting, Barcelona

21 June, 14.00 - 17.00
General assembly meeting of the PCE platform, Barcelona

22 June, 9.30 - 12.00
PCE roundtable on liquid biopsy, Barcelona


PCE Secretariat

Rue Guimard 10, 1040 Bruxelles, ASBL/VZW 656.553.804
Confidential – for internal use only
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