Eurordis - Rare Disease Europe

39th Workshop of the EURORDIS Round Table of Companies (ERTC): Addressing systemic inequalities through patient-driven innovation & research

Tuesday, 25th February 2025, DoubleTree by Hilton Brussels City, Rue Gineste 3, Brussels, Belgium.

09:30-16:30 CET

Agenda

Full programme

Overarching goal and scope

Recent discussions have emphasised the urgent need to sustain innovation and enhance research investment to help Europe regain its global competitive advantage. While this approach could revitalise Europe’s public health system, the rare disease community has consistently called for a shift towards needs-driven innovation, guided by collective responsibility and equity-focused investment decisions. 

As the new college of European Commissioners begins its five-year term, accompanied by the development of a new financial framework, this workshop explored how a patient-centred approach to research and innovation can address systemic inequalities and reduce gaps in health equity. 

Workshop’s objectives: 

• Demonstrate the added value of the rare disease patient community in shaping research, development and access pathways; 

• Review our community’s advocacy asks by addressing barriers to needs-led innovation; 

• Explore opportunities to embed these priorities into future European research policies and funding programmes. 

Programme at a glance: 

Opening remarks argued for a greater policy shift towards needs-driven research and innovation, where collective responsibility guides investment decisions, reduces gaps in health equity and helps revitalise Europe’s public health system. Participants reflected and review progress and shortcomings towards delivering on this scenario, as initially set out by the rare disease community in the Rare 2030 recommendations (2021). 

Smaller group discussions focused on how to add value and create solutions across the value chain to influence future policies and funding mechanisms on the following topics: 

Morning parallel sessions: 

• Accelerating clinical trials to ensure research innovations translate into tangible health benefits 

• Capitalising on public-private investments to foster patient-driven rare disease research 

Afternoon parallel sessions: 

• Bridging the gap: strengthening European healthcare systems for equitable patient access; 

• Advancing equity in newborn screening.

Questions

If you are an ERTC member, please send any questions concerning registration to Jo Marshall at: jo.marshall@eurordis.org

If you are not an ERTC member but are interested in attending the workshop, please reach out to Céline Schwob at: celine.schwob@eurordis.org