ACTION PLAN Today, at the European Economic and Social Committee conference ‘For an EU Commitment to Tackling Rare Diseases’ in Budapest, a shared vision for a European Action Plan on Rare Diseases took centre stage. OIFE fully agrees that we need a European action plan - sooner rather than later. #rarediseases
🚨Europe prepares for comprehensive action on rare diseases🚨 Today, at the EESC’s conference ‘For an EU Commitment to Tackling Rare Diseases’ in Budapest, a shared vision for a European Action Plan on Rare Diseases took centre stage. Speakers from EU institutions, national rare disease organisations, and civil society emphasised the need for coordinated efforts, measurable outcomes, and cross-border collaboration to transform rare disease care by 2030. Key opening messages included: 💡 Baiba Miltovica ( President of the Section for Transport, Energy, Infrastructure and the Information Society, European Economic and Social Committee) set the day’s tone by stating that, “We [the EESC] strongly believe we need an EU Action Plan on rare diseases,” highlighting the importance of aligning existing tools like the Cross-Border Healthcare Directive with stronger enforcement. 💡 Tomislav Sokol (MEP) advocated for a comprehensive strategy, calling for “common, measurable objectives that move beyond isolated efforts and foster collaboration across borders.” 💡 Virginie Bros-Facer (EURORDIS) added: “No single country can tackle the complex challenges rare disease patients face alone. An Action Plan is not about reinventing the wheel but about bringing together existing resources into a cohesive, coordinated strategy.” The conference also celebrated the success of the European Reference Networks (ERNs), which have revolutionised specialised care across Europe. Antonio Parenti (DG SANTE) described the ERNs as “a flagship activity with clear EU added value, showcasing what can be achieved when countries work together to advance diagnosis, treatment, and research for rare diseases.” Another central theme of the day's discussions was an in-depth analysis of the European Health Data Space (EHDS), highlighting the progress achieved so far and the challenges that remain ahead. Citing evidence from our #RareBarometer programme, Stefan Živković (NORBS - National Organisation for Rare Diseases of Serbia) called for efficient yet secure data sharing to boost innovation and benefit everyone. “The EHDS is a unique opportunity that can revolutionise healthcare for patients, but ethical governance must ensure trust and must empower patients to know how their data is being shared and for what purposes.” The EESC’s exploratory opinion, ‘Leaving No One Behind,’ adopted in October and further explored today, provides a roadmap for the Action Plan, calling for a coordinated European framework with measurable goals to improve care, reduce diagnostic delays, and ensure equitable access. We look forward to building on this momentum at the conference of the Polish Presidency of the EU (starting January 2025), as announced in the closing of today’s discussions. 🤝 Read the full press release: https://lnkd.in/eKhspQUH #RareDiseases #Europe #EESC #DataSharing #Innovation #EuropeanReferenceNetworks #ERNs #equality