Video on the patient perspective on data sharing
We are pleased to present the first of a series of videos presenting the patient perspective on data sharing and role of RD-Connect in rare disease research. The video interviews with the members of the Patient Advisory Council (PAC) were recorded during the RD-Connect Annual Meeting in Athens.
In this short video, Joseph Irwin, a member of PAC and RD-Connect Scientific Advisory Board, shares his experience as a father of a child with a rare disease and presents his views on the importance data sharing in rare disease research.
This and other RD-Connect videos are available on the official RD-Connect YouTube channel.