In November 2022, Together for Rare Diseases joined calls from the rare disease community for a dedicated EU Action Plan for Rare Diseases (the ‘Action Plan’) to be put in place, with a clear vision for the future rare disease ecosystem in Europe (see our Policy Asks). Czechia was successful in putting forward a Call to Action on rare diseases under its EU Presidency (Jul-Dec 2022), receiving 21 Member States’ endorsement. The Czech Call to Action included a call for the European Action Plan to be put in place, together with increased integration of ERNs into national health systems for more holistic care.
For Together4RD, as a multi-stakeholder movement looking to unlock ERN-industry collaboration for the benefit of people living with a rare disease, the content of the Action Plan should enable and support public-private partnership. Together4RD has outlined its ambition for how the Action Plan can support ERN-industry collaboration in its policy asks, aligned with EURORDIS’ own proposal for the Action Plan ; in particular, EURORDIS’ third pillar around ‘Building resilient infrastructure, promoting inclusive and sustainable industry and fostering innovation’.
During this webinar, Together4RD explored in more detail what the Action Plan should contain under this third pillar, specifically for the role of collaboration and ERNs.
Confirmed Speakers
