In the week of March 7 till March 13, Barcelona saw a week full of rare disease events, putting the spotlight on rare disease research. Several international meetings and events were organized: the membership meetings of E-Rare, Elixir, NeurOmics, and RD-Connect; the launch of Hipbi-RD; and RE(ACT) Congress. Several members of IRDiRC Executive and Scientific Committees participated in the various meetings.
Prof. Hugh Dawkins, Vice-Chair of IRDiRC Executive Committee, presented an update on IRDiRC and our global commitment to rare diseases in the NeurOmics2016 meeting. Prof. Hanns Lochmüller also gave an update on IRDiRC at the RD-Connect meeting, indicating that “IRDiRC will meet the goal of 200 new marketed orphan medical products well before 2020.”
At the occasion of the RE(ACT) Congress, Dr. Christopher Austin, Chair of IRDiRC’s Executive Committee, and Mr. Yann Le Cam, Chair of IRDiRC Therapies Scientific Committee, gave the opening speeches. In Dr. Austin’s speech, entitled “Catalyzing Translational Innovation,” he emphasized that “translation in rare disease research is obligatorily a team sport.” Mr. Le Cam’s speech, “ReAct for Patient Access to Innovation”, highlighted the bridges that need to be built, to shape the rare disease ecosystem.