On March 11-13, 2016 LUPUS EUROPE organized a Patient panel, bringing together 9 Lupus affected persons from all over Europe to share their experience of living with lupus. This panel, coming after the Helsinki Convention kick off, Brussels Patient panel 1 on Treatment, and Vienna Convention delegates panel, aimed at further exploring the burden of living with lupus, and to dive into the burden of treatment day after day. Deliverables targeted were (i) “Verbatim” that frame Lupus patient’s experience (around treatment), leading to scientific level publication by Davide Mazzoni (LUPUS EUROPE Co-opt advisor in charge of research); (ii) Video recorded testimonies on living with lupus, building further on the Patient Panel 1 video series, and (iii) Ideas on how Clinical Trials and Treatment may be improved, a key area of concern in the development of new treatments.
The Panel was conducted through a series of interactive presentations, team discussions and working groups. Unfortunately, Davide Mazzoni, one of our planned facilitator had to cancel last minute due to disease activity. He was replaced last minute by Kirsi Myllys (Treasurer of LUPUS EUROPE)
HERE, you can find a complete report on this interesting event
- Document (PDF – 1.3 Mb)