On May 14-16th over 1,500 people from 57 different countries, representing all stakeholder groups in the rare disease community, joined together at the 10th European Conference of Rare Diseases & Orphan Products — ECRD 2020. EPTRI, an EU-funded project coordinated by CVBF and in which TEDDY is involved, was glad to attend such an important event presenting a poster entitled “European Paediatric Translational Research Infrastructure: accelerating the future of the paediatric research” and also participating with an oral presentation on session 0503, delivered by EPTRI Coordinator Donato Bonifazi. The session was entitled “From Research to Access: Is a European Collaborative Approach Possible?” and participants discussed whether it is currently realistic to imagine one unified European approach from development to access better medicines and therapies. The session looked at the pre-existing successful model of partnership.
ECRD is currently the largest patient-led rare disease event and its aim is to build the foundation to shape future rare disease policies. As stated by Yann Le Cam, Chief Executive Officer of EURORDIS, “the outcome of the conference is a new impetus to initiate a new legislative framework for rare diseases“.
If you missed the conference, you have the opportunity to get access to the recordings of the session in which Dr. Bonifazi participated and all the other sessions at the following link until May 2021: https://www.rare-diseases.eu/register/
All the conference posters are now available for viewing and downloading on the official website: https://www.rare-
