Our CEO Avril Daly, met with Olivér Várhelyi, European Commissioner for Health and Animal Welfare today, in her capacity as President of EURORDIS – Rare Diseases Europe to discuss key priorities for the rare disease community and the broader European health agenda.
Avril was invited as part of a small delegation from EURORDIS, where she spoke with Commissioner Várhelyi about how we can implement meaningful progress for people living with rare diseases through EU Health policies. Their discussion covered key topics such as:
· The ongoing reform of EU pharmaceutical legislation, and the importance of embedding the patient voice to guarantee treatments remain accessible, affordable, and innovative.
· Plans for a Critical Medicines Act and how it could help address medicine shortages and reduce Europe’s reliance on external supply chains, ensuring timely access to advanced therapies and orphan therapies for patients with rare conditions.
· The development of a new European Biotech Act, exploring how advances in health technology assessment (HTA), clinical trials, and innovation can better serve the needs of the rare disease community.
A key focus of the discussions was ensuring that innovation in rare diseases continues to thrive and that people living with rare diseases remain at the centre of policy development and legislative change. Avril emphasised the necessity for any new EU legislation, including pharmaceutical reforms and biotech initiatives, to reflect the needs and experiences of patients and protect timely access to safe, effective, and affordable treatments.
During the meeting, the delegation also discussed the opportunities and challenges for innovation in rare diseases. As Ireland prepares to assume the Presidency of the Council of the European Union from July to December 2026 with a focus on competitiveness – it is an important opportunity to highlight the vital role of innovation in transforming diagnosis, care, and treatment for people living with rare diseases across Europe.
At RI, we believe it’s essential that legislative reforms not only encourage innovation but also protect patients’ access to timely, effective treatments. The voices and experiences of patients must be part of every step forward. We remain committed to supporting EURORDIS and the 1,000 patient organisations it represents, as well as EU institutions, including the European Reference Networks, in shaping policies that improve diagnosis, care, and treatment for people living with rare diseases across Europe.
We look forward to sharing updates on these important discussions and continuing to work towards better outcomes for everyone impacted by rare diseases.
