On Tuesday 18th of November Ingunn Westerheim (OIFE) & Tracy Hart (OIF) together hosted a workshop about patient involvement in research at the ICCBH Virtual Forum.

The workshop had more than 50 participants from Europe, US, Canada and beyond. It included three talks about patient involvement from different perspectives as well as a constructive Q&A and discussion with active participation from OI-experts, clinicians, researchers and patient representatives.

Workshop Nov 18th 17.30 – 18.30 CET: Patient involvement in research

Moderators: Tracy Hart (OIF)/Ingunn Westerheim (OIFE)

Short guide to patient partnerships in rare disease research projects
Virginie Bros-Facer (Paris, France)

What I learned from involving patients in my research
Lars Folkestad (Odense, Denmark)

Patient involvement – A box to tick off or making a real difference?
Ingunn Westerheim (Oslo, Norway)

We have received a lot of positive feedback after the event. A big thank you to the ICCBH for allowing us to share the recording of the workshop with the larger community.