The Eight European Conference on Rare Diseases and Orphan Products (ECRD 2016) was held in Edinburgh, United Kingdom, from May 26 to May 28. ECRD 2016 brought together over 80 speakers and more than 700 participants, covering six themes: from the latest research and developments in new treatments, to innovations in healthcare, social care and support at the European, national and regional levels. This edition was linked by the common theme “Game Changers,” and was aimed at changing the the future of rare diseases together. Numerous sessions aimed to contribute to these changes: in the domain of research; diagnosis; drug development, authorization and access; care provision; social policy; and global society.
Several IRDiRC Scientific and Executive Committee members contributed actively to the meeting and participated through session presentations and panel discussions, highlighting the contributions IRDiRC has made over the last couple of years. In particular, the session dedicated to “boosting rare diseases in a global collaborative research environment” gave a comprehensive overview of IRDiRC’s development so far, and showed glimpses of what is yet to come. The recommendations resulting from IRDiRC Task Forces: Patient-Centered Outcome Measures and Small Population Clinical Trials were also presented.