OIFE in Riga
EURORDIS Membership Meeting (EMM) brought together leading rare disease advocates from across Europe. For the first time, the biennial event was held in Riga – a city whose history of resilience and civic action offered a fitting backdrop for discussions on strengthening the voice of the rare disease movement.
Across two days of workshops, strategy sessions, and shared learning, participants took up that challenge. EMM 2025 focused not only on raising voices, but on strengthening them – with knowledge, clarity, and purpose.
One of the most urgent issues discussed in Riga was the future of patient involvement in the European Medicines Agency (EMA). As part of the EU pharmaceutical legislation revision, there’s concern that patient representatives on key EMA committees – the CHMP and PRAC – may not be guaranteed voting rights.
In a workshop on regulatory engagement, participants explored what it means to be part of EMA structures and why it matters that patient voices are not only included, but empowered. This workshop took place against the backdrop of a recent joint statement having been published by EURORDIS and the European Patients’ Forum (EPF) calling on EU Member States to protect these rights – not as a gesture, but as a safeguard for credible, inclusive decision-making relating to the lifecycle of medicines. OIFE is also supporting the joint statement.
We had two very competent people representing OIFE at the EURORDIS-Rare Diseases Europe Membership Meeting in Riga, Latvia from May 22-24,2025: Former vice president Dace and her daughter Emilija (15).