Shaping the future for rare diseases : back from ECRD2018
The 9th European Conference on Rare Diseases & Orphan Products (ECRD) took place on 11-12 May 2018 in Vienna, Austria, and was, once again, a frank success. Over 800 people attended the conference from 58 countries from around the world, more than ever before. The multi-stakeholder audience included more than 300 patients/patient advocates, over 100 healthcare industry professionals, but also consultants, payers, regulators, policy makers, researchers, healthcare professionals and academics. But the reach was even bigger: during the live online transmission of the plenary and opening sessions, more than 300 people connected from 41 countries.
This year’s theme was “360° Collaborative strategies to leave no one behind”, a perfect theme for a perfect conference : the views and ideas of all kind of stakeholders were combined around six themes covering all aspects of rare diseases with a common denominator: put the patient at the centre or, better, putting persons suffering from rare diseases at the centre. Ways for the future were explored to anchor the European reference Networks at the national level, to engage patients in research and in Health Technology Assessment, to better integrate healthcare systems and social systems towards holistic care, to reinforce cooperation between countries to afford the economic burden of rare diseases, to make the best use of cutting-edge technologies for increased and responsible data sharing in health and research, and to make patients from all parts of the world have equal chances to access the best level of care and information.
Building on more than 20 years of collaborative efforts for RD policies, this conference fulfilled its mission of inspiring the future. And as usual, it was an incredible opportunity for people of different horizons to talk each other.
