Programme

Programme of the ECRD 2020

Rare diseases should not be forgotten in the COVID-19 pandemic. The health of people living with a rare disease should not be left to luck or chance. The ECRD 2020 theme “The rare disease patient journey in 2030” recognises that the next decade holds great potential for improvement and that while we cannot predict the future, we all have a role in preparing for it. As the EU shapes its future policy and spending frameworks, ECRD 2020 served as an opportunity to press the ‘pause button’ and take the time to co-create policy options today that can lead to a better patient journey in 2030 and beyond.

Conference participants heard from world experts on: future trends in diagnosis, rights to access healthcare and medicines, care delivery, digital health, the development, assessment and appraisal of therapies and the triple A’s: accessibility, affordability and availability of treatments. The collaborative dialogue, learning and online interactivity that took place during ECRD 2020 will form part of the groundwork to shape the national and international rare disease policies of the future. ECRD 2020 put a spotlight on emerging trends in best practices, promising technologies and cutting-edge thinking across the six conference themes.

You are invited to continue your involvement in preparing your future in the Rare 2030 Foresight Study throughout the year!

Full content is still available on demand for one full year until May 2021! If you missed the opportunity to join the live online conference, you can still access recordings of all sessions by registering here.

Here is a taster of what you will be able to access:

European Commissioner Helena Dalli plenary speech
Pre-recorded sessions: Getting our rights ‘right’: An international framework for rare diseases (Theme 2) and Orphan Drug Development Guidebook (Theme 4)

Programme of the ECRD 2020

Comité du programme

Co-présidents du Comité du programme

Membres du Comité du programme et leaders thématiques

Comité d’information

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