PANCREATIC CANCER EUROPE Newsletter
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QUARTERLY NEWSLETTER

Dear Platform Members, Dear All,

We are very pleased to present you the ninth quarterly newsletter of Pancreatic Cancer Europe.

PCE Quarterly newsletters will now focus on a specific topic for each quarter. This newsletter will cover all you need to know about national support and how PCE members lead national advocacy strategies.

QUARTERLY NEWSLETTER

  • Pancreatic Cancer Advocacy Workshop #2 in Rome: a success!
  • Leading an advocacy action: the example of Ellok
  • More from Pancreatic Cancer Europe: general news section
  • Next dates

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 contact@pancreaticcancereurope.eu

PANCREATIC CANCER ADVOCACY WORKSHOP #2: A SUCCESS!




On the 3rd and 4th of April, PCE held its Pancreatic Cancer Advocacy Workshop, also named PACAW, for the second year in a row. This year’s PACAW was in Rome, near the Palazzio Chigi, home of the Italian government.

6 representatives from patient groups all over Europe gathered to discuss advocacy and learn how to design an advocacy strategy to promote pancreatic cancer in their country’s policies.

Thanks to the coordination of Ali Stunt and Antonella Cardone, two of the Board members, the event was quite successful and the participants gained a lot of insight. They went back to Poland, Sweden, Scotland, Austria, and their home cities in Italy with many ideas to push forward our cause at the national level.

This year’s edition also featured a session on communication, in order to help our members create impactful messages to engage with the right people. Another novelty was the creation of an award which will reward the best national strategy developed by participants to the PACAW. Contestants will have to submit their strategy by May 31st and the winner will be announced at the General Assembly meeting in July in Barcelona.

We’d like to thank all the participants for their enthusiasm and energy, as well as our sponsors for their constant support. We’re hoping to review bold, comprehensive action plans and wish good luck to all our colleagues who participated to the PACAW!


Insider’s view: one of the PACAW’s numerous passionate discussion

PREPARING AN ADVOCACY ACTION: THE EXAMPLE OF ELL.O.K.






A word from our colleagues at ELL.O.K. the Hellenic Cancer Federation, and their plans for World Pancreatic Cancer Day 2019.

“We are still in the 1st Quarter of 2019, but we are already busy planning our national activities and participation in WPCD2019 so that our plans can be finalized before the end of the 2nd Quarter!”

ELLOK is an umbrella patient organization, legalized in Greece as a federation, and currently it has a membership of 36 cancer patient organizations, all over Greece and covering all types of cancer, common and rare. ELLOK has had a leading role in introducing WPCD and raising awareness in Greece about pancreatic cancer and referral for treatment to specialized oncology clinics.

Their planned activities for WPCD2019 will unfold in four directions:


1. Capacity building, empowerment of their members

“We consider of great importance to empower our members for raising awareness in their local communities. We are working towards educating and helping our members to acquire the necessary skills. In order to facilitate participation and uptake of the WPCD campaign, we will prepare a dissemination guide for our members, where we will present practical tips and ideas for social media posts and other activities (seminars, articles for the press, building lighting, athletic events, etc.).  We will also provide examples of infographics, WPCD  and PCE brochures (we had translated them already in 2014 and we will be glad to review and translate any new materials) and materials based on the #DemandBetter campaign and any new  campaign theme.”


2. Awareness raising among the general public

“Our members will work in this direction locally in their communities but also ELLOK will trigger publicity in national reach mass and digital media and we will also propagate the WPCD2019 campaign through our channels and speaking opportunities at conferences and events from mid October to mid December 2019.

We are proud to announce that our member KEFI won the Prix Galien Greece 2019 Patient Initiative Award for their activities regarding pancreatic cancer during 2017-2018. 

For 2019 three of our members have already planned WPCD awareness raising events in four different cities across the country:

  • KEFI in Athens
  • AGALIAZO in Piraeus
  • WE ARE TOGETHER in Ioannina
  • The Rhodes Cancer Patients Support Association in Rodos Island

Some more events and the lighting of a few buildings are still under planning.”


3. Awareness raising about persisting symptoms and need for referral among family doctors 

A new law has recently been introduced in Greece making mandatory for all citizens to register with a family doctor. We aim to raise awareness and distribute the pancreatic symptoms leaflet to  this group of doctors and encourage them to consider persisting such symptoms seriously, promptly prescribing diagnostic tests and/or referring patients to specialized oncology hospitals/clinics.


4. Pancreatic cancer policy advocacy  

“ELLOK advocates for pancreatic cancer policy measures aiming at physicians’s specialization, that is offering incentives to interns and practicing doctors (specialized oncology surgeons, pathologists, medical oncologists, dieticians, etc.) to specialize in treating and caring for pancreatic cancer patients. We will also advocate for more research funding addressed to pancreatic cancer research.”

ELL.O.K.’s programme should be finalised by the end of the following quarter, let’s wish them success in the design and the implementation of this strategy!


MORE FROM PANCREATIC CANCER EUROPE: GENERAL NEWS SECTION




WELCOME TO OUR NEW MEMBERS  

We are extremely happy to send a warm welcome to our new Platform members!



Dr. Piero Rivizzigno, President of Codice Viola

“As a patient advocacy organization, Codice Viola is committed to improve the quality of life and the survival of pancreatic cancer patients. We are engaged in the sharing of scientific and clinical information and knowledge on pancreatic cancer through different digital platforms and events. In that respect Codice Viola has been involved in the organization of the annual meeting during the World Pancreatic Cancer Day, “Incontro Pazienti-Medici”, www.giornatamondialetumorepancreas.org in addition to focused events on familiarity, nutrition, genomics, …

Our blog tumorepancreas.com is among the most visited sites on pancreatic cancer in Italy. Moreover we are devoting a dedicated effort to create awareness in the public opinion about the issues that patients, their families and caregivers have to face during the course of the disease and. Eventually we are involved in the patronage of the instances of the pancreatic cancer community toward the public institutions and agencies in charge of governing the Italian healthcare. Codice Viola was founded by Daniele Maiolo, board member, Augusto Vico, Board member, e Piero Rivizzigno, board member and president. All the three founders have paid their heavy toll to pancreatic cancer.”




SHORT-TERM SCIENTIFIC STAY AWARD / ECI GRANT

PCE is proud to announce it launched, for the first year, its own call for short-term scientific stay award (S3A) to train Early Career Investigators (ECI) on pancreatic cancer research.

The S3A pretends to consolidate existing networks of pancreatic cancer research, as well as to set up new partnerships and collaborations between high-level pancreatic cancer research institutions. It should also allow ECI to go to an institution or laboratory in another European country to learn a new technique or to take measurements using instruments and/or methods not available in their own institution/laboratory.

You can contact the PCE Secretariat for more information on the process and requirements for application.


next dates

SAVE THE DATE!

General Assembly Meeting
4th of July 2019, in Barcelona, Spain.

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