ECRD 2020 Online Conference – registration opened

EURORDIS, together with Orphanet and Inserm are hosting their 10th European Conference on Rare Diseases & Orphan Products (ECRD) on May 14-15. Due to the COVID-19 situation, ECRD 2020 will take place exclusively online. This conference is a great opportunity to network and share knowledge with all stakeholders in the rare disease community from over 50 countries around the world – patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators.

The rare disease patient journey in 2030

This year’s theme is “The rare disease patient journey in 2030”. It 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 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.

Themes and topics

Patient organisations can register here for a reduced rate and provide which theme session they wish to attend. Online participation by Duchenne and Becker muscular dystrophy patient organisations are strongly recommended to participate in the global rare disease discussion in the field of policy making. Once registered, you are able to participate in one of the six interactive sessions led by over 100 industry experts around six themes, all connecting the theme of the Conference ‘The journey of living with a rare disease in 2030’, which draws on the outcomes of the ongoing Rare 2030 foresight study.

1. The future of diagnosis: new hopes, promises and challenges
2. Our values, our rights, our future: shifting paradigms towards inclusion
3. Share, care, cure: transforming care for rare diseases by 2030
4. When therapies met needs: enabling a patient-centred approach to therapeutic development
5. Achieving triple A’s: accessible, available and affordable treatments for people living with a rare disease
6. The digital health revolution: hype vs. reality

Understanding policy discussions

To prepare for the conference, we advice you to register for the free ECRD 2020 pre-conference webinar taking place on Thursday, 23 April from 13.00 – 14.00 CEST. This webinar is an opportunity for you to hear the latest outcomes of the Rare2030 Foresight Study and understand how the study lays a foundation for policy discussions throughout each theme of the ECRD.