On 17 September, Together for Rare Diseases hosted a successful Policy Workshop on Tackling Challenges to Improve ERN Collaboration with Industry, bringing together over 40 participants including the Chair and representatives of the Board of Member States of European Research Networks (ERNs), as well as officials from the European Commission.
The workshop aimed to analyse policy-related barriers—whether real or perceived—that have hindered interactions between European Reference Networks (ERNs) and industry in the past, with a special focus on identifying practical partnership opportunities moving forward. Among the most pressing issues in ERN-industry collaboration, participants discussed the need for increased funding, clearer operational frameworks, and enhanced communication to better support partnerships in rare disease research. The development of practical tools and frameworks emerged as a critical priority to facilitate these collaborations.
Advocacy for an EU Rare Disease Action Plan also took center stage. The growing political momentum, with new Members of the European Parliament and the Hungarian Presidency (July-December 2024) prioritizing rare diseases, signals a positive outlook. Both the upcoming Polish and Danish Presidencies are expected to maintain this focus through 2025. Hosting a dedicated event in the European Parliament to further advance rare disease research collaborations across Europe is an exciting prospect for 2025.
The insights and learnings from this workshop will form the foundation of the 2025 Together for Rare Diseases action plan, which will be discussed with our multistakeholder Steering Committee.
Read the full report below