Invitation to PREVENTABLE Thematic Webinar 2 – Addressing Hidden Needs: Strengthening Psychosocial Support for Families Living with RTRS
We warmly invite you to join the PREVENTABLE project’s second thematic webinar, where experts, patient advocates, and policymakers will come together to address one of the most pressing but often hidden needs in RTRS care: psychosocial support for individuals and families.
Despite major advances in genetics and clinical care, too many families face uncertainty, emotional burden, and gaps in psychosocial support. This webinar will shine a light on these challenges and share concrete pathways toward sustainable, person-centred care across Europe.
📅 Date & Time: 29 October 2025, 14:00 - 15:00 CEST Brussels Time
💻 Format: Online
🎙️ Moderator & Speakers
Marta Moreira Marques – Behavioural scientist from NMS UNL (PREVENTABLE Project) applying behaviour change research to improve RTRS care pathways.
Isabel Fernandes – Oncology leader and clinical researcher driving cancer care and policy innovation through national and EU initiatives.
Jennifer Perry – Li-Fraumeni syndrome survivor and President of the LFS Association, advocating for families affected by hereditary cancer.
Mariska – Interim Chairperson of PTEN België/Nederland, fostering community and awareness for individuals and families with PTEN syndrome.
🔑 What to Expect
✨ Inspiring Presentations – Hear insights from the PREVENTABLE project on unmet psychosocial needs and decision-making challenges in RTRS care.
✨ Expert Panel Discussion – Explore adaptive care models and sustainable financing strategies for embedding psychosocial support in health systems.
✨ Audience Q&A – Engage directly with experts and advocates.
✨ Takeaway Guidance – Gain practical insights to strengthen advocacy, care coordination, and policy development.
👥 Who Should Attend?
Patients and families living with RTRS
Patient organisations and advocates
Psychologists and mental health professionals
Clinicians and care providers
Policy experts, health authorities, and decision-makers
Anyone interested in improving rare disease care
📝 Register Now
Participation is free, but registration is required.
After registering, you will receive a confirmation email with the webinar link and participation details.
💡 Why Join?
This is more than a discussion—it’s a chance to shape the future of psychosocial care for rare tumour risk syndromes. Together, we can bridge the gaps, support families, and ensure that emotional well-being becomes a fundamental part of healthcare.