HULL DONOSI ECPC (EUROPEAN CANCER PATIENT COALITION) NEWSLETTER

Hrvatska udruga leukemija i limfomi (HULL) članica je ECPC-a i sudjeluje u radu i aktivnostima te međunarodne asocijacije pacijenata koja okuplja udruge oboljelih od raka. U nastavku možete pročitati newsletter te zajednice pacijenata oboljelih od raka u EU, nedavni politički razvoj, obavijesti o nadolazećim događajima i druge uzbudljive novosti.

Dražen Vincek

BECA Committee draft a report on “Strengthening Europe in the fight against cancer – towards a comprehensive and coordinated strategy”

 

Following the release of the Special Committee on Beating Cancer (BECA) Committee draft report proposed by MEP Véronique Trillet-Lenoir on “Strengthening Europe in the fight against cancer – towards a comprehensive and coordinated strategy”, the European Cancer Patient Coalition jointly with the Cancer-related Complications and Comorbidities Initiative members, and the Transforming Breast Cancer Together Initiative, submitted in total 75 amendments.

We were delighted to see that many BECA committee members are aligned with our views and the amendments we proposed were tabled.

Furthermore, we would like thank them and to draw your attention for the next steps until the final voting as this is of utmost importance for the future of cancer treatment and the quality of life of cancer patients and their caregivers during survivorship.

Read the document here.

Opportunities for hepatitis related cancer prevention in Europe's Beating Cancer Plan
October is Liver Cancer Awareness Month (LCAM). With our event, we wanted to raise awareness of the opportunities in significantly reducing the burden of liver cancer by better tackling viral hepatitis B and C and to discuss these with EU policymakers in view of the cancer prevention initiatives mentioned in the Beating Cancer Plan.
The event took place on 28th October and it was organized with the support of the European Cancer Patient Coalition (ECPC), the Association Collaborating on Hepatitis to Immunize and Eliminate the Viruses in Europe (ACHIEVE) and the European Association for the Study of the Liver (EASL).

You can take a look at the event summary report here.

The Right to Be Forgotten has been approved in Portugal
The Right to Be Forgotten has been approved by law in Portugal and it will be implemented by January 2022. One step towards the implementation of the Right to Be Forgotten across Europe. Dsicover more here.
Rehabilitation Atlas
On behalf of the Patient Support Working Group of the Association of European Cancer Leagues (ECL), we are sharing with you the 2nd edition of the ECL Rehabilitation Atlas.

An inventory of 61 different rehabilitation programmes, ordered by category of activity, which were reported by cancer leagues within the ECL membership via a survey conducted in 2019-20. The Atlas was officially launched on the occasion of the Cancer Rehab Awareness Week (6-12 September) through a social media campaign and a press release.

Optimal Nutritional Cancer Care
To influence EU programmes and to support national initiatives, the European Nutrition for Health Alliance and its partners have developed a joint call to action with 7 actionable recommendations designed to ensure the protection of nutritional status in cancer in national health policies.

Take a look at the Call to Action and the press release.

2021 Global Leukemia Patient Experience Survey
The 2021 Global Leukemia Patient Experience Survey will be used to build a global picture of the experiences of patients and their carers, friends and family. Our aim is to understand the key issues, experiences and unmet needs for CLL patients. This survey follows the recent survey conducted by CLLAN to explore CLL support provision & needs worldwide, available resources and unmet needs. Both surveys will inform our policy work and strategic planning to best support the CLL community with summary reports and core recommendations that will also be presented at conferences as abstracts and posters.
 
It is currently only available in English and Hebrew. The other languages will follow soon.
What’s missing in the EU Research Agenda: Recommendations from the European Association for the Study of Obesity.

We are proud to be sharing a new report titled What’s Missing in the EU Research Agenda: Recommendations from The European Association for the Study of Obesity’ which has been developed by the European Association for the Study of Obesity (EASO) in collaboration with 32 other key health organisations, including the World Health Organisation (WHO) and the Organisation for Economic Co-operation and Development (OECD).
 
The consultation was held in order to identify critical gaps in the EU Research Agenda which must be addressed to better support understanding, prevention, treatment, and management of obesity as a non-communicable disease (NCD).
 
Recommendations identified from the consultation notably focus on the need to:  

  • Bridge the evidence gap on obesity to support meaningful policies that maximise impact 
  • Implement a clear chronic disease narrative on obesity and identify structural research parameters 
  • Collect, harness and leverage appropriate and meaningful data  
  • Support the generation of personalised pathways for prevention, treatment and long-term management of obesity and obesity related complications  
  • Improve communication and outreach amongst all research agenda stakeholders  

 
To read more about the findings, click here.

Advanced Renal Cancer & Advanced Liver Cancer
Are you a liver cancer or a renal cancer patient? Or do you care for someone with renal or liver cancer? What are the most important things you’d like help with? Please take par on this Delphi study and let us know your opinion.

This is a project funded by the European Oncology Nursing Society about patients with advanced liver or advanced kidney cancer who are treated with targeted therapies. The objective is to find out what outcomes / areas these patient groups consider as priority in their care, and help clinicians offer better support. For more information, please see here.

ERN Research Training Workshops funding opportunity

The EJP RD Research Mobility Fellowships funding opportunity is now open until November 28th! The call aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.
The exchange can be carried out within the same ERN (Full Members and Affiliated Partners), between different ERNs (Full Members and Affiliated Partners) and between ERN Full Members / Affiliated Partners and non-ERN institutions. More information on the application can be found here.

Launch of EHDEN Academy Patient/Patient Group Course on Real World Data, Evidence & EHDEN

This free course has been designed to provide non-experts with the knowledge they need to better understand the importance of real world data, how it’s protected, and the vital role they can play in the healthcare ecosystem and health research.

To participate in the first module, check out the EHDEN Academy and choose the course after setting up a free account. Please circulate also to those with an interest in the patient community.

Cancer & Sexuality leaflets

On the 29th September 2021 took place the ‘Let’s break the taboo around cancer & sexuality’ webinar.  During this event the ECL Patient Support Working Group’s leaflets were presented. They are now available and you can check them out by clicking on the following links: patients’ leaflet & healthcare professionals’ leaflet.

 
What's coming up

REGISTRATIONS SOON
 

Nutrition and wellbeing in pancreatic cancer patients
We are glad to invite you to the European Parliament online event “Nutrition and wellbeing in pancreatic cancer patients” that Pancreatic Cancer Europe is organising in cooperation with the Challenge Cancer EU Parliamentary Intergroup.
The event will take place on Thursday, 18th November 2021, from 15:30h to 17:00h CET. The online event is organised in the frame of the World Pancreatic Cancer Day 2021 activities.

 
REGISTER HERE 
ESCAIDE
Join ESCAIDE from 16th to 19th November to discuss current issues facing infectious disease prevention and control, hear the latest high-quality research in the field and meet fellow public health professionals and researchers.

The European Antibiotic Awareness Day (EAAD) is a European health initiative, coordinated by the ECDC, which takes place on 18 November annually. This year’s online campaign will be launched with a session at ESCAIDE (18 Nov, 10:00-11:30). You can attend this session by registering to the conference.

REGISTER HERE 
 
Final Conference of the Joint Action on Innovative Partnership for Action Against Cancer (iPAAC JA) – Cancer Control in Europe: Finding Sustainable solutions
The Final iPAAC JA Conference entitled ‘Cancer Control in Europe: Finding Sustainable Solutions’ will take place on 13-14 December 2021. The meeting will showcase the results of iPAAC JA, assess progress on improving cancer control in Europe and discuss how to reinforce cancer control strategies in the years to come. Notably, the Conference will also see the launch of the final deliverable of iPAAC,Roadmap on Implementation and Sustainability of Cancer Control Actions.
 
Please see the draft programme here.

REGISTER HERE 
 

Joint EFPIA & EFGCP 'Good Lay Summary Practice' Recomendations
EFPIA and EFGCP are jointly organizing a free webinar to provide "Good Lay Summary Practice" Recommendations. The event will take place on the 9th November 9, 2021, from 15.00 to 16.30 CET.

A multistakeholder group consisting of 60+ academic, industry, not-for-profit and patient organisations, jointly led by EFGCP and EFPIA, (“Roadmap Initiative for Good Lay Summary Practice”), compiled needs for transparency improvement on clinical study results, available guidance and experience when preparing and disseminating Lay Summaries (LS) in Europe and the US. Read more here.

REGISTER HERE 
 

40th Congress of the European Society of Surgical Oncology
The 40th Congress of the European Society of Surgical Oncology will take place from the 8th to the 10th of November 2021. The conference will bring together experts from different countries to share their  experiences facing cancer. ESSO was established in 1981 to support its members in advancing the science and practice of surgical oncology for the benefit of cancer patients.

Check out the programme here.

REGISTER HERE 
 

7th Annual Wold Cancer Series: Europe 2021
The Economist’s 7th Annual World Cancer Series: Europe convenes policymakers, health-care providers, industry, and patient groups for robust debate and dialogue. It will take place between the 8th and the 11th of November. The faculty of experts will explore not only what can be done to improve cancer control, but why this is urgent. Registrations can be done through this here.
 
ECPC recommends 
  • Survey on financial impact of your cancer diagnosisThe Netherlands Cancer Institute is developing a patient research on the financial effects of a cancer diagnosis. The Netherlands Cancer Institute, in collaboration with the German DKFZ Heidelberg, would like to learn about  financial effects of a cancer diagnosis and how you, as a (former) patient, feel about those. Would you mind filling in their survey, anonymously? Click here
 
  •  Euproms 2.0 survey is now open! Europa Uomo second quality of life survey has been designed to find out more about how prostate cancer and its treatments affect men weeks, months and years after diagnosis. It is urging all men who have experience of prostate cancer to take part!

    The study, named EUPROMS 2.0, is based on an online survey which takes only 25 minutes to complete. You can take part  on it until the 23rd of December.