How to build a research ecosystem in your disease

Bettina Ryll
Bettina Ryll
  • 20 minute duration

Session

‘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.

Learning outcomes

  1. Understanding how scientists think- and why it matters for us as patients
  2. A Science universe at your disposal: smart searches, useful tools and free resources
  3. Getting the science you want- becoming an active part in your research ecosystems
Bettina Ryll
Bettina Ryll
Dr. Bettina Ryll is the current chair of the ESMO Patient Advocates Working Group (PAWG). She holds a medical degree from the Free University of Berlin, Germany and a PhD in Biomedical Sciences from University College London, UK. 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, such as MAPPS (medicines’ adaptive pathways to patients), previously known as Adaptive Licensing. Lately, her focus has moved to sustainable healthcare models ensuring access to innovative therapies for cancer patients and incentives for sustainable innovation. Dr. Ryll is involved in numerous initiatives promoting evidence-based advocacy. She is fascinated by the enormous potential and capacity of patient networks to both educate and support patients as well as to capture data at the primary data source – the patients themselves – and to generate evidence at a granular level non-accessible to outsiders.