Virginie Hivert

Acting Chief Executive Officer and Head of Therapies & Access, EURORDIS - Rare Diseases Europe

Virginie Hivert is Acting CEO and Head of Therapies & Access at EURORDIS–Rare Diseases Europe. She drives the organisation’s strategic work to advance the development of medicines for people living with rare diseases and to embed meaningful patient engagement across research, regulatory processes and access pathways. Since joining EURORDIS in 2014, she has been a leading figure in the organisation’s collaboration with the European Medicines Agency, serving as an Observer on the Committee for Orphan Medicinal Products, as the PRAC Alternate member representing patient organisations, and now as a Civil Society representative on the EMA Management Board. Internationally, Virginie has played an influential role in the International Rare Diseases Research Consortium since 2011, including four years as vice chair of its Therapies Scientific Committee. She brings more than 25 years of experience across research, healthcare and rare disease advocacy, supported by a PharmD and a PhD in Biological Sciences.

Dear delegates,

In light of the latest developments and as a precautionary measure, the Cyprus Presidency of the Council of the EU 2026 has decided to postpone this week’s Presidency Conference Advancement of Treatments for Rare Diseases, scheduled to take place in Cyprus 5–6 March 2026.

Further information regarding possible re-arrangement and new dates will be communicated in due course.

We apologise for the inconvenience caused by these adjustments and thank you for your understanding.

Yours sincerely,
The Organizing Committee
Conference “Advancement of Treatments for Rare Diseases”
Cyprus Presidency of the Council of the European Union 2026