Rare Disease Research Challenge

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions (including all 24 ERNs) from 35 countries. On March 3rd Dace Liepina and Ingunn Westeheim was supposed to represent OIFE at a networking event in Paris related to the Rare Diseases Research (RDR) Challenges Call.

We were particularly interested in challenge nr. 3 “Characterize Rare Bone Disorders (RBD) Mobility Challenges in Real World Setting” sponsored by the company IPSEN. The aim of the challenge is to develop full-body automated mobility assessment tool(s) to assess real-life mobility challenges in people living with rare bone disorders, to be compared vs available disease specific patient- and Health Care Professionals (HCP)-reported mobility assessments. You can read more about the challenge here.

Because of concerns connected to COVID-19, Dace & Ingunn decided to cancel their trip, but we have followed up with meetings on Zoom and phone conferences with different stakeholders connected to the challenge.

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