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 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.