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Sustainable care for Rare Tumour Risk Syndromes

13/03/2026

📢 Reminder: Porto Cancer Meeting – Register Now!

The Porto Cancer Meeting is approaching, bringing together researchers, clinicians, and experts to discuss the latest advances in cancer research, prevention, and care.

This event is a great opportunity to connect with the scientific community, exchange ideas, and explore innovative approaches shaping the future of oncology.

🗓 Don’t miss your chance to be part of the conversation.

🔗 Register here: https://www.i3s.up.pt/event.php?v=381

Organizer:
i3S - Instituto de Investigação e Inovação em Saúde

Scientific Sponsor:
ERN GENTURIS
FLASH project
ASPIC - Associação Portuguesa de Investigação em Cancro
Sociedade Portuguesa de Literacia em Saúde
Liga Portuguesa Contra o Cancro
Europacolon Portugal
Doenças Raras Portugal

11/03/2026

🧬 Myth vs Fact: Rare Disease Prevention

❌ Myth: Rare diseases only affect children.
✔️ Fact: Roughly half of all people affected by rare diseases are children, with many diagnosed at birth; however, many others, such as Huntington's disease or most Hereditary cancer syndromes, are diagnosed in adulthood.

Rare diseases can affect people at any stage of life, making awareness, early detection, and access to genetic information essential for better prevention and care.

09/03/2026

🧬 Myth vs Fact: Rare Disease Prevention

❌ Myth: Rare diseases are extremely rare collectively.
✔️ Fact: While each individual rare disease affects a small number of people, over 7,000 distinct rare diseases exist, impacting an estimated 1 in 10 people globally and 30 million people in Europe.

Raising awareness about rare diseases is essential to improve early detection, research, and prevention strategies for those affected.

07/03/2026

🎬 Cannes, science, and prevention!

📍 At the end of January, our partner Rolain Marion from CHU Rouen represented PREVENTABLE at the Genetics Conference at the Palais des Congrès et des Festivals in Cannes (France).

The conference brings together leading medical genetics and research professionals to share innovations and future directions in the field. Marion Rolain presented a poster on the first results of the PREVENTABLE project, which focuses on Li-Fraumeni Syndrome, a rare hereditary condition with a high cancer risk.

🎬 In the city of cinema, the “Palme d’Or” for scientific dedication goes to the entire PREVENTABLE team! Collaborating with such committed colleagues makes this work truly impactful. – Rolain Marion

05/03/2026

🧬 Myth vs Fact: Genetic Cancer Syndromes

❌ Myth: Genetic testing is very expensive and not covered by insurance.
✔️ Fact: Genetic testing costs have decreased significantly over the years and are often covered by insurance if a patient meets certain criteria.

Understanding the facts about genetic testing helps people access the right care, earlier. Awareness is a key step toward better prevention and informed health decisions.

01/03/2026

Rare diseases are individually uncommon — but together, they represent a major global health reality.

🔹 Rare diseases affect 5% of the world’s population
🔹 300 million people worldwide are living with a rare disease
🔹 There are more than 6,000 identified rare diseases
🔹 Collectively, the rare disease community equals the population of the world’s 3rd largest country

Behind these numbers are millions of families seeking answers, care, and support. Greater awareness, research investment, and equitable healthcare systems are essential to ensure no one is overlooked simply because their condition is rare.

Information source: rarediseaseday.org

28/02/2026

Today, we stand in support of Rare Disease Day and the 300 million people worldwide living with a rare disease.

A rare condition may affect only a small number of individuals, but together, rare diseases represent a global health priority that cannot be overlooked.

Equity means more than awareness — it means fair access to timely diagnosis, appropriate treatment, specialised care, social support, and equal opportunities in education, work, and daily life.

No one should be left behind because their condition is rare. Together, we advocate for research, recognition, and equitable healthcare for all.

Information source: rarediseaseday.org

27/02/2026

Rare cancers may be individually uncommon, but together they represent a significant part of the global cancer burden.

🔹 Rare cancers affect fewer than 6 people per 100,000 each year
🔹 1 in 5 cancers diagnosed is rare
🔹 72% of rare diseases are genetic
🔹 70% of genetic rare diseases begin in childhood

Behind every statistic are individuals and families navigating complex diagnoses, limited treatment options, and the need for specialised care. Raising awareness is essential to drive research, improve early diagnosis, and ensure equitable access to care.

Information source: rarediseaseday.org

26/02/2026

⏳ Last Day – Early Bird Registration Closing Soon

Secure your early bird rate today for the ###II Porto Cancer Meeting.

Join leading experts, researchers, clinicians, policymakers, and patient representatives to advance dialogue on Bridging Research and Policy in Hereditary Cancer.

📅 Early Bird Deadline: 27 February 2026
📍 Porto, Portugal
📆 Meeting Dates: 22–24 April 2026

Be part of the conversations shaping the future of hereditary cancer research, care pathways, and health policy across Europe.

🔗 Register now and save your seat:
https://www.i3s.up.pt/event.php?v=381

25/02/2026

📢 Scientific Sponsorship Announcement

We are proud to highlight Doenças Raras Portugal as a Scientific Sponsor of the ###II Porto Cancer Meeting, reinforcing the importance of collaboration in advancing research, awareness, and support for people living with rare diseases.

This partnership strengthens the commitment to improving prevention, diagnosis, care pathways, and quality of life for individuals and families affected by rare and hereditary cancers.

📅 22–24 April 2026
📍 Porto, Portugal

🔗 Learn more and register: https://www.i3s.up.pt/event.php?v=381

24/02/2026

📢 Scientific Sponsorship Announcement

We are proud to highlight Liga Portuguesa Contra o Cancro as a Scientific Sponsor of the ###II Porto Cancer Meeting, reinforcing a shared commitment to cancer prevention, patient support, and advancing research.

This partnership strengthens the scientific programme and promotes collaboration between researchers, clinicians, patient organisations, and policymakers working together to improve cancer outcomes.

📅 22–24 April 2026
📍 Porto, Portugal

🔗 Learn more and register: https://www.i3s.up.pt/event.php?v=381

23/02/2026

📢 Scientific Sponsorship Announcement

We are pleased to highlight Europacolon Portugal – Apoio ao Doente com Cancro Digestivo as a Scientific Sponsor of the ###II Porto Cancer Meeting, strengthening our shared mission to support patients, raise awareness, and advance research in digestive cancers.

This collaboration reinforces the importance of patient advocacy, prevention, early detection, and multidisciplinary research in improving cancer outcomes and quality of life.

📅 22–24 April 2026
📍 Porto, Portugal

🔗 Learn more and register: https://www.i3s.up.pt/event.php?v=381

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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