Latest Past Events

Webinar for the ERNs: “Linking up all those data: why should we make data FAIR”


The webinar will explain what are Findable Accessible Interoperable and Reusable (FAIR) data and why it is critical that different types of information, such as medical records, examination tests, sequencing results and availability of biosamples, are made FAIR at the source. Speaker: Marco Roos, Leiden University Medical Center, The Netherlands; Please register to the webinar here.


Golden Helix Summer School “Rare Genomics: Genomics of Rare Diseases, Rare Cancers and Rare Drug Outcomes”

Dolphin Bay Family Beach Resort Dolphin Bay Hotel, Σύρος

The Golden Helix Summer Schools are international educational activities in the field of Genomic Medicine and are organized on a biennial basis, jointly by the Golden Helix Foundation and the Genomic Medicine Alliance. These educational activities constitute a unique opportunity for researchers around the world to expand their knowledge in the rapidly evolving field of

Webinar for the ERNs: “Finding registries and biosamples in just few clicks: RD-Connect Registry & Biobank Finder and Sample Catalogue”

Speaker: Mary Wang, Fondazione Telethon, Milan, Italy; This webinar will demonstrate how to use two tools, that will help you quickly identify patient registries in Europe and beyond that hold data on your disease of interest. They also let you find rare disease biobanks and browse their sample collections, with detailed information about each individual sample.

There are no upcoming events.