Webinar: PrevenTalk #1

Understanding and Addressing the Challenges of Rare Tumour Risk Syndromes in Cancer Prevention by Uniting Science, Health Management and Policy.

Publisert 23.05.2024
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Introducing the inaugural "PrevenTalk" webinar, the first in this series. This session provides an overview of the EU-funded project PREVENTABLE and raises awareness about Rare Tumour Risk Syndromes (RTRS). Expert insights will explore the prevalence of RTRS, challenges in diagnosis and surveillance, and their implications for healthcare systems.

Additionally, the importance of early detection, surveillance strategies, and risk reduction measures to enhance cancer prevention efforts will be discussed.

This webinar aims to facilitate dialogue among geneticists, hospital managers, and policymakers, with the aim of driving actionable policy changes and providing support for those affected by RTRS.

QR-kode for deltakelse på webinar

Time and place

24th May, 2024, 16:00-17:00 (Brussels Time)
One hour online webinar
Zoom Video Conference

Click here to join or use the QR kode.

Our speakers

  • Carla Oliveira, moderator
  • Hildegunn Høberg Vetti, Geneticist FMM
  • Raquel Chantre, Hospital Manager
  • Alina Senn, Policymaker
  • Dr. Ana Povo: Policymaker


  • 16:00 - 16:05: Opening by Moderator, Carla Oliveira
    Moderation and Introduction to the EU funded project PREVENTABLE.
    Carla Oliveira will introduce the EU-funded project PREVENTABLE, created with the aim of assessing the clinical, social, and financial impact of applying multidisciplinary and specialized care to prevent advanced disease in families affected by Rare Tumour Risk Syndromes (RTRS). Additionally, she will lead the moderation of the "PrevenTalk".

  • 16:05 - 16:15: Talk with Geneticist, Hildegunn Høberg Vetti
    Genetic Testing for Rare Tumour Risk Syndromes and the Role of Geneticists in Cancer Prevention. Genetic Testing for Rare Tumour Risk Syndromes—Hildegunn Hoberg Vetti will discuss the significance of genetic testing in identifying these syndromes,preventing and detecting cancer, and promoting geneticists' role in cancer prevention initiatives.

  • 16:15 - 16:25: Talk with Hospital Manager, Raquel Chantre
    Navigating Rare Tumour Risk Syndromes: Healthcare Management Strategies for Patient Engagement and Effective Prevention.
    Health Management for Rare Tumour Risk Syndromes—Raquel Chantre will discuss strategies for patient engagement, familiarity with RTRS care pathways, collaboration with stakeholders, addressing implementation challenges, and the cost-effectiveness of optimized care pathways.

  • 16:25 - 16:45: Talk with Policymaker, Alina Senn and Dr. Ana Povo
    Policy Considerations for Rare Tumour Risk Syndromes: Collaboration, Evidence-Based Decisions, and European Cancer Prevention Initiatives.
    Alina Senn will discuss how the work of the PREVENTABLE project can be integrated into healthcare policies for rare diseases, by identifying specific changes needed to address challenges, considering evidence-based science's role in cancer prevention for individuals with RTRS, and about the collaboration opportunities between healthcare professionals, researchers, and patient advocacy groups to better address the needs of RTRS patients.

    National Strategies and Policies for Rare Diseases: Addressing Challenges and Collaboration Opportunities
    Dr. Ana Povo will discuss national strategies and policies implemented for rare diseases, address challenges posed by rare tumour risk syndromes, emphasize evidence-based policy decisions, and explore collaboration opportunities between policymakers, healthcare professionals, academia, and patient advocacy representatives to better address patient needs.

  • 16:45 - 16:55: Discussion Session:
    Q & A with all the speakers and the audiences

  • 16:55 - 17:00: Closing Remarks By Carla Oliveira
    (Project Coordinator of PREVENTABLE Project)

More information about the Preventable Project