Dobro došli u novo izdanje ECPC biltena.

ECPC vam donosi najnovije vijesti iz europske zajednice pacijenata oboljelih od raka, razvoj politike, nadolazeće događaje i nove mogućnosti.

U ovom izdanju: Dijelimo s vama naše novosti i nove prilike za uključivanje u istraživačke projekte usmjerene na pacijenta. Govori se o sudjelovanju ECPC-a u događajima na visokoj razini koji oblikuju politiku borbe protiv raka. Ne zaboravite pogledati nadolazeće događaje kao što su Economistova 8. godišnja Svjetska serija o raku 2022., 5. Gago konferencija, 24. IPOS svjetski kongres psihoonkologije i UICC godišnji kongres.

Dražen Vincek

Izvor: European Cancer Patient Coalition (ECPC)

Wednesday, 12 October 2022 – n. 7
Welcome to the new edition of the ECPC Newsletter.

ECPC brings you the latest news from the European cancer patient community, policy developments, upcoming events and new opportunities.

In this edition: We share with you our news and new opportunities to get involved in patient-centred research projects. We will talk about the participation of ECPC in high-level events that are shaping cancer policy. Don’t forget to take a look at the upcoming events like the Economist’s 8th Annual World Cancer Series 2022, the 5th Gago Conference, the 24th IPOS World Congress of Psycho-Oncology, and the UICC Annual Congress.
ECPC Extraordinary AGM: Minutes and related documents

The European Cancer Patient Coalition (ECPC) held its Extraordinary AGM virtually on Wednesday, 20 July 2022 from 15:00-17:00 CET. The Minutes of the Extraordinary AGM 2022 can be found here.

The meeting was held virtually with members of the Board and the Secretariat joining from ECPC’s offices. ECPC President, Francesco de Lorenzo, chaired the meeting, assisted by the Secretary of the Board, George Kapetanakis.

Director of ECPC, Charis Girvalaki, introduced the Extraordinary AGM’s agenda main parts as follows: (i) Approval of the Action Plan and Budget of 2023 (ii) the nomination of an External Statutory Auditor for the Financial Years 2022-2024.
Here is the list of ECPC full and associate members who participated virtually to the Extraordinary AGM (Annex 1). 

ECPC President, Francesco de Lorenzo, interviewed at Euronews on the new EU scheme for cancer screenings

ECPC President, Francesco de Lorenzo, was interviewed by Euronews and spoke briefly about the new EU scheme for cancer screenings.

When asked about his thoughts on the European Commission’s new approach to cancer screening as part of the EU Cancer Screening Scheme, President de Lorenzo highlighted how: “This is a very important achievement because mainly for lung cancer there has been, for a long time, a lot of barriers”.

As a reminder, the European Commission‘s recommended EU countries to increase the number of screenings, covering more target groups and cancer types. The recommendations, based on the latest scientific evidence, trace a new scheme that aims to increase the target of offering cancer screenings to 90% of the EU population, qualifying for breast, cervical and colorectal cancer by 2025.

Ministers of Health approve Call to Action on Oncology from informal CZ Presidency meeting (13-14/7, Brno – Czech Republic)

It’s ECPC’s great pleasure to announce that the Ministers of Health expressed their support for the Call to Action on Oncology during their Informal Meeting in Prague.

The Call to Action is the main output from the Czech Presidency of the Council of the European Union Expert Conference on Oncology “Modern Cancer Control: Saving Lives through smart solutions”, which took place on 13 – 14 July, 2022 in Brno, Czech Republic. ECPC President, Francesco de Lorenzo and ECPC Senior EU Affairs Manager, Dr. Adela Maghear, represented the organization as official delegates and brought their input to the expert conference.

This non-binding document reaffirms a strong support for all pillars of the Europe’s Beating Cancer Plan and major objectives of the EU Mission on Cancer. It aims to find ways to move forward in identified interlinked EU flagship initiatives, accelerate their progress and bypass obstacles.

As a reminder, the document was initially prepared by expert guarantors of the Conference and further developed in close cooperation with distinguished speakers, oncology experts of the EU Member States, representatives of leading European initiatives on cancer prevention, senior representatives of the European Commission and of the World Health Organization and, representatives of European patient organizations

CDDF Multi–Stakeholder Workshop on Patient Access and Engagement in Oncology Drug Development

The Cancer Drug Development Forum (CDDF) organised a “Multi–Stakeholder Workshop on Patient Access and Engagement in Oncology Drug Development”. The event took place the 19 – 20 September, 2022, in a hybrid format, in Amsterdam, Netherlands. The event brought together experts in healthcare, researchers, patients, industry, regulators, payers, policy makers and other relevant stakeholders, in a series of 5 sessions over two half days.

ECPC President, Francesco de Lorenzo, delivered the welcome note for 
Session 1: empowering patient involvement in cancer research.”

“Patient-centred cancer research is to become the standard in Europe in the long term, becoming even more closely aligned to the needs of patients. ECPC acts as the missing link between all stakeholders, always keeping in mind patient centricity, ethics and sustainability. Advocacy patients should be systematically involved as active partners or co-researchers at eye-level, and they should hold an appropriate share of decision-making power in the research process. ECPC will make use of the ESO learning and IARC repository platforms to develop educational materials to inform patients at the national level about the need and steps for their involvement in cancer research.”

Prof. Mark Lawler, ECPC Scientific Committee member, and Kathi Apostolidis, Past President and Chair of  the Scientific Committee, co-chaired the Session 5: “Turning Data Into Intelligence for Patient Focussed Oncology Drug Development”. Prof. Mark Lawler presented  the lessons from DATA-CAN, the UK’s Health Data Research Hub for Cancer in  driving a data informed patient relevant agenda. 

The workshop examined ways in which patients can be empowered to be active participants in cancer research; how we ensure that the patient voice is amplified both in the delivery of clinical oncology research and in regulatory decision making; the challenging areas of reimbursement and access to innovative oncology medicines for patients; the absolute primacy of deploying data intelligence to underpin patient focussed oncology drug discovery and development and the highly relevant but sometimes challenging area of cross border access for clinical trials in oncology.

European Health Forum Gastein Conference
26 – 29 September, 2022

The European Health Forum Gastein celebrated its 25th anniversary and took stock of the substantial accomplishments in public health over the last quarter century. The challenges and policy options for action urgently needed across sectors, borders, and disciplines at this watershed moment for health, security, and solidarity were discussed at this conference.

ECPC Senior EU Affairs Manager, Dr. Adela Maghear, spoke at European Cancer Organisation (ECO), the European Federation of Pharmaceutical Industries and Associations (EFPIA) and European Cancer Patient Coalition (ECPC) joint session: “Patient perspective: Results from ECPC Survey”. Currently, the survey is being updated with recent post-pandemic data.

So far, the responses demonstrate considerable divergence in policy and practice across the countries surveyed. Some areas where these divergences were detected are cancer disability and benefits for patients and carersemployment issuesself-employed workerscancer and pension rights.

“Building forward better” requires fundamental transformation of the way our societies operate – and this can only be achieved through peace in Europe, supported by political will, collaboration, and unity. Only by shooting for the moon and leaving “business as usual” firmly in the past do we stand a chance of succeeding in our mission to build a healthier, more equitable, and sustainable future for all.

Learn more..

Launch of PrEvCan campaign at ESMO Congress 2022: The frontline oncology workforce unites to reduce the burden of cancer before it hits

ESMO, the leading professional organisation for medical oncology, together with EONS, a pan-European membership organisation for cancer nurses, announced on 9 September, the launch of the ground-breaking, Europe-wide “Cancer Prevention Across Europe” campaign (PrEvCan) aimed at reducing the burden of cancer. The announcement was made at the opening press conference of the ESMO Congress 2022 in Paris.

The PrEvCan campaign is initiated and led by EONS with ESMO as key partner, alongside ECPC and more than 50 other international and national organisations. The campaign is based on the European Code Against Cancer (ECAC), which sets out 12 recommendations ranging from physical activity and dietary guidelines all the way to tobacco use and second-hand smoke.

ECPC President, Francesco de Lorenzo, presented the patient perspective on promoting health for all individuals at the 2022 ESMO Congress.

“ECPC is glad to share this initiative with EONS and ESMO. The coalition’s contribution, by sharing the campaign messages with more than 470 members across Europe, will help to strengthen and more widely disseminate the importance of healthy living. The PrEvCan campaign also represents an excellent opportunity for collaboration among cancer patient organisations, physicians and oncology nursing societies in Europe, who are at the frontline of cancer care.” ECPC President, Francesco de Lorenzo

ECPC calls on a strategic alliance between oncology nurses (EONS), doctors (ESMO) and patients (ECPC) to shape the future of cancer prevention in Europe.

Learn more…

ECPC session with pharma industry at ESMO congress

On 10 September, 2022, during the annual ESMO Congress, ECPC hosted a session with pharmaceutical companies to inform about the organization’s achievements, current projects, future plans and strategy on its way to address cancer patients’ needs and rights in Europe.

During this meeting, which included companies such as Bayer, Sanofi, IPSEN, or AstraZeneca, ECPC President, Francesco de Lorenzo, gave an overview of ECPC actions and aims and the potential ways of collaboration with the industry that can help patients’ interests. Meanwhile, Senior EU Affairs Manager, Dr. Adela Maghear, and Senior Health and Research Projects Manager, Juan-Jose Ventura, presented the policy and research areas of ECPC.
Pharma companies engaged in a fruitful discussion, expressing their views and comments over ECPC strategies and their openings to support ECPC contribution to Europe’s fight against cancer.

Preserving Patient Access to Clinical Trials: Aligning on Near-term Strategies for Multiregional Clinical Trial Initiation

On 7 September, ECPC Senior EU Affairs Manager, Dr. Adela Maghear, was the invited speaker at the pre-ESMO event by the USA non-profit organization LUNGevity entitled “Preserving Patient Access to Clinical Trials: Aligning on Near-term Strategies for Multiregional Clinical Trial Initiation”.  Dr. Maghear spoke about the impact that the new EU In Vitro Diagnostic Medical Devices Regulation (IVDR) has on patient access to these devices and the clinical trials involving their use.

The new IVDR introduces new requirements for the authorisation of clinical trials involving in vitro diagnostics (IVDs). However, the regulatory infrastructure necessary to meet these requirements will not be in place for at least another five years, which may lead to significant delays in the initiation of clinical trials and


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