IRCAI | Projects
May 16, 2024
Usposabljanje za izvajanje učenja na daljavo in izdelavo prosto dostopnih izobraževalnih gradiv
ECRD 2024: Action within reach

Colleagues Tanja Zdolšek Draksler and Alenka Guček are online attending the 12th European Conference on Rare Diseases and Orphan Products (, which is fully hybrid and has over 1000 participants. We have 2 e-posters being presented, both in the category Research & Innovation. First e-poster deals with bias in rare disease data repositories (link:, second with global data analysis for easier rare disease monitoring (link: The conference is organised under the auspices of the Belgian Presidency.

The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future. With over 600 participants, the Conference is an unrivalled opportunity to network and exchange invaluable insights within the rare disease community. Through collaborative efforts, these discussions culminate in clear policy recommendations that can influence both EU and national policies.