At this year’s World Orphan Drug Congress in Barcelona and one year after the launch of the project, Josie Godfrey, Director at JG Zebra Consulting, opened the panel discussion on Hercules, a collaboration between pharmaceutical companies, charities, academics, patient organisations and experts to build the evidence required by Health Technology Assessment (HTA) Agencies for Duchenne muscular dystrophy, a rare inherited disease. The National Institute of Health and Care Excellence (NICE) is the first HTA agency the project aims to reach.

The panellists discussed the benefits of the collaboration, such as accessing new data more easily, avoiding duplication, collaborating with patients and obtaining cost-effective gold-standard results recognised by HTA bodies. Results expected in Germany with such a project were discussed. The panel also presented the encountered challenges in the implementation of the project. However, one great step forward seems to have been done, as Project Hercules is the recipient of the 2019 EURORDIS Black Pearl Company Award for Patient Engagement.

From right to left: Fleur Chandler (Chair Project Hercules Steering Group), Annika Bergman (Pricing and Market Access Europe, Sarepta), Meriem Bouslouk-Marx (Orphan drug adviser, Germany), Emily Crossley (Joint CEO Duchenne UK)