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Sustainable care for Rare Tumour Risk Syndromes

04/12/2025

Welcome, December 2025! 🎉

As we enter the final month of the year, we want to take a moment to reflect and hear from you.

💬 What has Preventable meant to you?

Whether you are a patient, caregiver, healthcare professional, researcher, or supporter, your voice shapes our journey.

Share your thoughts, experiences, or hopes for the future in the comments below. Let us close 2025 together with insight, connection, and purpose. 💙

26/11/2025

🧬 Myth vs Fact: Genetic Cancer Syndromes

❌ Myth: If cancer runs in my family, I will definitely get it.

✔️ Fact: Carrying an inherited gene mutation (like BRCA1 or BRCA2) significantly increases your cancer risk, but it does not guarantee you will get cancer. Other factors and additional genetic changes are usually needed for cancer to develop. Proactive screening and prevention strategies can help manage and reduce this risk.

Empower yourself with knowledge. 💙

24/11/2025

What Do They Say About PREVENTABLE?

💬 "I am excited to be part of a project with the potential to improve many lives. While RTRS are rare individually, together they affect a significant number of families, and behind every case, there are lives that can benefit from better diagnosis and care”

— Carolina Di Fabrizio
Assistant researcher, Universidade NOVA de Lisboa - SBE

What about you? Share your thoughts with us in the comments below!

21/11/2025

🧬 Myth vs Fact: Genetic Cancer Syndromes

❌ Myth: Most cancers are hereditary.

✔️ Fact: Only about 5 to 10% of all cancers are caused by an inherited gene mutation. The majority of cancers (90-95%) are sporadic, resulting from acquired gene mutations due to ageing, lifestyle (e.g., smoking, diet, inactivity), and environmental factors.

Understanding the difference helps empower informed decisions and encourages proactive health habits. 💙

19/11/2025

✨ What Do They Say About PREVENTABLE?

“The PREVENTABLE project is critical because it focuses on identifying and reducing the risks of rare tumour risk syndromes, directly improving patient safety. By promoting early detection and personalised care, we can prevent life-changing outcomes and ensure that patients remain at the centre of our efforts. I am truly excited to be part of a project that combines cutting-edge research with a strong commitment to patient-centred care.”

— Amalia Nicole Nanciu
Resident Physician & Clinical Geneticist in Training
Institut für Humangenetik, Universitätsklinikum Bonn

18/11/2025

📢 Reminder — Don’t Miss This Important Event!

Bridging Research and Policy in Hereditary Cancer
A Joint Conference with the Horizon Europe PREVENTABLE Project

📅 22–24 April 2026
📍 i3S & Super Bock Arena – Pavilhão Rosa Mota, Porto, Portugal

This special edition marks the 32nd Porto Cancer Meeting and celebrates the 10th Anniversary of i3S. The event will bring together researchers, clinicians, patients, policymakers, economists, and international partners to advance the conversation on hereditary cancer prevention and care.

With a strong focus on genetics, biology, clinical pathways, social impact, healthcare costs, policy, and patient-centred solutions, the conference will also host the final event of the EU-funded PREVENTABLE project, including the launch of the Preventable Learning Hub.

🔗 Full details & programme: https://www.i3s.up.pt/event.php?v=381

We look forward to welcoming you in Porto!

17/11/2025

💡 Key Takeaways from PREVENTABLE Thematic Webinar #2

Our latest session highlighted the vital role of psychosocial support in the care of people affected by Rare Tumour Risk Syndromes (RTRS).

✨ Top insights from the discussion:
• Psychosocial care should begin at the time of diagnosis and continue throughout the patient journey.
• Support must include the entire family, recognising their central role in coping and care.
• Access to psychosocial services should be standardised, equitable, and sustainably funded across Europe.
• Early intervention improves emotional well-being, strengthens treatment adherence, and helps reduce long-term economic burden—especially for families living with delayed cancer onset, such as those with Li-Fraumeni Syndrome (LFS).

The session closed with a shared commitment to make psychosocial support an essential part of RTRS management.

🎥 Missed the webinar? Watch it here: https://youtu.be/z6FLvHo4Qhs

13/11/2025

What do they say about Preventable?

💬 “I am supporting the PREVENTABLE project because it is paving a new pathway to prevent some hereditary cancers.”

— Judith Balmaña, Head of the Hereditary Cancer Program, Hospital Vall d’Hebron

Her words remind us why PREVENTABLE exists, to advance research, collaboration, and innovation that make hereditary cancer prevention a reality.

11/11/2025

🎥 Missed our Thematic Webinar #2?

You can now watch the full recording on the PREVENTABLE YouTube channel!

💡 Ensuring and Advancing Sustainable Psychosocial Care and Support Systems for People Affected by RTRS, a powerful discussion on integrating psychosocial support, adaptive care models, and sustainable policy strategies for Rare Tumour Risk Syndromes (RTRS).

🔗 Watch now: https://youtu.be/z6FLvHo4Qhs

10/11/2025

🟣 Today is World NET Cancer Awareness Day!

Neuroendocrine Tumors (NETs) are rare, often complex cancers that can be difficult to diagnose — but early detection and awareness can save lives.

At , we stand with the NET community and continue working toward better prevention, early diagnosis, and equitable care for people living with Rare Tumour Risk Syndromes (RTRS) across Europe.

💜 Let us shine a light on NETs, because awareness makes a difference.

28/10/2025

📢 Tomorrow! - Thematic Webinar #2

💬 Ensuring and Advancing Sustainable Psychosocial Care and Support Systems for People Affected by RTRS

📌 Register here: https://luma.com/alyrok7l

📅 29 October 2025
🕑 14:00–15:00 CEST (Brussels time)

Join us for PREVENTABLE Thematic Webinar #2, where experts and advocates will explore how to strengthen psychosocial support and ensure equitable care for those living with Rare Tumour Risk Syndromes (RTRS).

🔑 Key Topics:
1️⃣ Integrated psychosocial services in RTRS care
2️⃣ Adaptive care models for psychosocial support
3️⃣ Policy and financing strategies for sustainable integration

🔗 Read more here: https://preventable.eu/2025/09/11/preventable-thematic-webinar-2-addressing-hidden-needs-strengthening-psychosocial-support-for-families-living-with-rtrs/

Endereço

I3S – Institute For Research And Innovation In Health, University Of Porto Rua Alfredo Allen 208
Porto
4200-135

Website

https://preventable.eu/

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