In the context of the current COVID-19 pandemic and in line with WHO guidelines, the upcoming ECRD will take place ONLINE on 14-15 May (Full statement). 

• Registration IS OPEN: Until 1 May;
• FREE pre-conference webinar on the Rare2030 Project: 23 April, 13.00 – 14.00 CEST. Webinar Registration is now open. The webinar is free for all conference attendees to hear the latest outcomes of the Rare2030 Foresight Study and understand how the study lays a foundation for policy discussions at the conference.

HOPE joins the organisation of the European Conference on Rare Diseases & Orphan Products (ECRD), which is recognised globally as the largest, patient-led rare disease event. 

The rare disease community has made great strides towards improving diagnosis, care and treatment for the 30 million people living with a rare disease in Europe in recent decades, but without vigilance and constant effort, progress can easily be reversed. The ECRD 2020 theme “The rare disease patient journey in 2030” recognises that the next decade holds great potential for improvement.

As the EU shapes its future policy and spending frameworks, ECRD 2020 serves 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 will hear from world experts on: future trends in diagnosis, rights to access healthcare and medicines, care delivery, digital health and the development, assessment and appraisal of therapies.

The collaborative dialogue, learning and conversations that will take place during ECRD will form part of the groundwork to shape the national and international rare disease policies of the future. ECRD 2020 will put a spotlight on emerging trends in best practices, promising technologies and cutting-edge thinking across the six conference themes:

• Theme 1: The future of diagnosis: new hopes, promises and challenges
• Theme 2: Our values, our rights, our future: shifting paradigms towards inclusion
• Theme 3: Share, Care, Cure: Transforming care for rare diseases by 2030
• Theme 4: When therapies meet the needs: enabling a patient-centric approach to therapeutic development
• Theme 5: Achieving the triple A’s by 2030: Accessible, Available and Affordable Treatments for people living with a rare disease
• Theme 6: The digital health revolution: hype vs. reality

Conference Programme

Read more: https://www.rare-diseases.eu/