PANCREATIC CANCER EUROPE Newsletter
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QUARTERLY NEWSLETTER

Dear Platform Members, Dear All,

We are very pleased to present you the first quarterly newsletter of Pancreatic Cancer Europe, which will be the first one for year 2018. You will find an update on the association’s activities, management, news and upcoming events.

QUARTERLY NEWSLETTER

  • Management of the association
    • PCE Annual General Meeting
    • Election of the Chair of PCE Board
    • Pancreatic Cancer Academy (name to be confirmed)
    • Endorsement requests
  • Update on Pancreatic Cancer Europe‘s latest activities:
    • Reference centre project
    • Collaboration with UEG
    • Pancreatic cancer session at European Digestive Cancer Days
    • PCE session at European Alliance for Personalised Medicine Congress
    • Welcome to our new members!
  • More News from Pancreatic Cancer Europe
  • 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 actionpancreaticcancer@outlook.com

ADMINISTRATION OF THE PLATFORM



PCE Annual General Meeting, Brussels

PCE held its second general assembly meeting on 5th December 2017 in Brussels. We were very happy to gather more than 20 represented members, to discuss the new challenges of the Platform for 2018.

For the first time, breakout sessions were organised for each Work Stream to brainstorm over their next activities and priorities with our members. Following these sessions, dedicated strategy accompanied with TCs will be organised in 2018.

The AGM was also a good occasion to welcome formally one of our latest members, Pancreatic Cancer Scotland represented by Mrs Fiona Brown, welcome on-board Fiona!

A huge thanks to all the participants of the AGM!

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Election of the Chair of PCE Board

Ali Stunt was elected as Chair of the PCE Board for 2018 during the general assembly meeting by 19 votes in favor and 1 abstention. Her mandate will run until mid-2019.

Ali Stunt was born in Belfast, Northern Ireland in October 1965.

In 2007, having accepted a place from Imperial College, London to pursue a PhD in stable isotope cosmochemistry, (which included the study of meteorites), Ali was diagnosed with pancreatic cancer. In 2013, six years after her diagnosis, Ali was ‘signed-off’ by her oncologist. Having been astounded by the dismal survival rates of pancreatic cancer patients and by the little or no improvement in these rates over the last 40 years, Ali joined forces with others to set up the UK’s very first Pancreatic Cancer Awareness Week in November 2009. Her passion to encourage early diagnosis for the illness prompted Ali to found Pancreatic Cancer Action (PCA) in August 2010.

Ali joined the Board of Pancreatic Cancer Europe in 2014. She also holds position as Steering Group Vice Chair of World Pancreatic Cancer Day and World Pancreatic Cancer Coalition and is a member of WG 4 patient management from EU Pancreas COST Action (BM1204) a platform that unites research groups across Europe.



Pancreatic Cancer Academy*

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

The idea of the Pancreatic Cancer Academy* popped up during the Board meeting in Barcelona in June 2017. The Academy will be set as a 2-day workshop with national members of the Platform to foster discussion and development of national advocacy plans on pancreatic cancer.

A dedicated TC will be organised with Board members and the leader of the National Support Work Stream, Lydia Makaroff, and interested members in mid-January.

*name to be confirmed

More information to be provided soon.



Endorsement requests


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ESMO GI

This year again/Next year, Pancreatic Cancer Europe will yet again 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.

More information to be provided soon.


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ECCO’s Patient Advisory Committee (PAC)

Pancreatic Cancer Europe has accepted ECCO’s proposal to become a member of the Patients advisory committee (PAC).

Operating within the frame of ECCO, the PAC is funded solely by ECCO and its main function is to present the patient perspective on ECCO initiatives. It seeks to position patient interests at the core of all ECCO activities in line with ECCO’s vision, by fostering an open dialogue with the ECCO Board.

ECCO is the voice of healthcare professionals involved in delivering care to cancer patients in Europe. The strategic objectives that underpin all ECCO policy activities are:

  • the advancement of multidisciplinarity and patient-centricity in cancer care
  • the promotion of policy recommendations for the improvement of cancer care, drawing on ECCO’s unique multidisciplinary reach

ECCO’s current policy priorities are to:

  • drive improvement in quality of cancer care in Europe via multidisciplinarity
  • ensure patients gain access to innovation, in all forms of care
  • advocate for step change improvement in the integration of care
  • highlight the core requirements of the oncology workforce to deliver the best care

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ESO Patient Advocacy Masterclass

Pancreatic Cancer Europe will be represented during the February’s ESO Patient Advocacy Masterclass. This third edition of the Masterclass will bring together senior representatives of European and international cancer patient networks as well as a small number of future leaders.

The Patient Advocacy Masterclass will be held in Lisbon from 23rd – 25th February 2018.

We are very proud to see the achievement of the Platform since its creation in 2014, and we look forward to developing new partnerships in 2018!

UPDATE ON PANCREATIC CANCER EUROPE’S ACTIVITIES



Reference centres

The Awareness and Diagnosis work stream has developed a set of criteria to define pancreatic cancer reference centres. As part of the 2018 work plan a manuscript will be developed around this questionnaire.

The questionnaire developed by the Work Stream is now online! Please do not hesitate to participate to this wide survey by filling the document on www.pancreaticcancereurope.eu/questionnaire/

The project aims to promote early diagnosis and better care to their patients, as well as contributing to the definition of excellence centre of pancreatic cancer across Europe.

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WORLD PANCREATIC CANCER DAY

Member’s activities to raise awareness on pancreatic cancer at national level. Please find below a look at the activities held locally by some of the Platform members.

We draw your attention to the fact that the Secretariat will be compiling a portfolio of 2017 WPCD activities of our Members, to communicate it externally to policy and health stakeholders, as well as to create inspiration to the whole Platform. If you are willing to participate please address your images and documents to the Secretariat.

From our side, Pancreatic Cancer Europe has developed a special communication plan dedicated to the awareness month, and supported the new infographic developed by our long-standing partner UEG.

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Like every year, Pancreatic Cancer Action’s strategy for WPCD was truly inspirationnal. The team developed a multi-layers communication plan and policy actions throughout the whole month of November. More information on their highlight video here.

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It is most noticeable that Ali’s team led a policy strategy through a parlementary event and the launch of a policy report on pancreatic cancer, actions which remain scarce today for pancreatic cancer and that our Platform is willing to enhance.

Our members from Europacolon Slovakia managed to get monuments illuminated for WPCD.
Courtesy of Thomas Salek

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Our colleagues from Europacolon Portugal have been leading a wide range of initiatives from a conference in Porto gathering stakeholders, to communication activities (TV and radio interviews, speeches, articles in the newspapers).

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They also were awarded winning project on pancreatic cancer awareness by Impact PANC. Congrats to the Portuguese team of Vitor Neves!

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More information on the Europacolon Portugal’s activities for WPCD here.

Our very new members from Pancreatic Cancer Scotland shared with us some of their most efficient activities at the occasion of WPCD. Their coverage on social media, especially on Twitter was breathtaking!

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Finally, sport activities were also covered by our Spanish members from Asociacion Cancer de Pancreas who have organised a run in favour of research on pancreatic cancer which gathered more than 1500 persons in Madrid.

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These few words are just glimpse of all the activities managed by our members for WPCD, we are expecting your returns on what YOU did in November!

Pancreatic Cancer Europe’s session during European Alliance for Personalised Medicine Congress

Pancreatic Cancer Europe held a special session during the EAPM Congress, on Tuesday 28th November in Belfast, during which the Board members and Prof. Andrew Biankin presented the dreadful situation of pancreatic cancer care across Europe.

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MORE NEWS FROM PANCREATIC CANCER EUROPE



First Global Platform teleconference of 2018

The first Platform teleconference of 2018 will be set before the end of January. You will receive a calendar invitation very soon.

agenda

23 – 25 February
ESO Patient Advocacy Masterclass, Lisbon

22 – 23 March
Pancreatic Cancer Academy (name to be confirmed), Madrid

20 – 23 June
ESMO GI, Barcelona

21 June
Pancreatic Cancer Europe Annual General Meeting, Barcelona

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PCE Secretariat
actionpancreaticcancer@outlook.com 
www.pancreaticcancereurope.eu

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