Welcome to Preventable’s RTRS Learning Hub! Here you will find an information repository dedicated to eight rare tumour risk syndromes (RTRS), with content in different formats from written explanations and educational videos to real-life testimonies. The goal is to provide accessible and reliable knowledge, helping patients, carriers, family members, healthcare professionals and health managers to better understand these conditions and connect with each other.
Rare Guide
Rare Guide is your trusted resource for understanding and managing rare hereditary conditions. Explore prevention strategies, recognize early detection signs, and navigate personalized care pathways across eight key syndromes. Understand how genetic mutations influence risk, when to act, and which screening approaches to follow, with clear, expert-backed guidance designed to support informed decisions and improve long-term health outcomes.
Rare Sources
Discover expert insights, patients, stories, and educational materials about rare syndromes. Browse videos, articles, and podcasts to learn more. Use the filters to find the content that matters most to you
Videos
Watch expert talks,
patient stories and
educational content.
Articles
Read expert-written
articles and in-depth
guides.
Podcasts
Listen to conversations
with experts and
patients.
Filters
Find what matters
most with our easy
filters.
Playlist
Playlist
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Find your support
Navigating life with a rare syndrome can be challenging, but you are not alone. Use our interactive map to find patient associations, expert medical centres, and support networks across Europe. Select your country and syndrome to connect with resources and communities near you.
This project is funded by the European Union under the Grant Agreement nº 101095483. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HADEA. Neither the European Union nor the granting authority can be held responsible for them.
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