- 20 minute duration
‘Science isn’t about authority, or white coats, it’s about following a method’ (Ben Goldacre). This is the favourite quote from Bettina Ryll. After losing her husband to melanoma, she founded the Melanoma Patient Network Europe and developed a special interest in patient-centric clinical research, in particular, innovative trial designs and novel drug development concepts. Next to this, she is involved in numerous initiatives promoting evidence-based advocacy.
In this session, Bettina shares her learnings on creating a strong scientific-driven patient community, and how patient advocates can build a research ecosystem in their rare disease.
- Understanding how scientists think- and why it matters for us as patients
- A Science universe at your disposal: smart searches, useful tools and free resources
- Getting the science you want- becoming an active part in your research ecosystems