Lúcia Mamede Discusses Patient Role at EU Parliament

Lúcia Mamede, IPOPI’s Medical Affairs Project Manager, brought the patient perspective to the forefront at the high-level meeting “Building a Research and Innovation Ecosystem for Rare Diseases,” held on April 29, 2025 at the European Parliament in Brussels (Belgium). This important event was organised by the Brains for Brain Foundation and kindly hosted by MEP Vytenis Andriukaitis (EPP, Lithuania), who co-chaired the meeting alongside Prof Maurizio Scarpa, President and Founder of the Brains for Brain Foundation and Coordinator of the European Reference Network for Metabolic Disorders (MetabERN).

The event brought together policymakers, researchers, patient advocates, and healthcare professionals to discuss how the EU can better support rare disease communities through a stronger and more inclusive research and innovation framework.

In her speech, Lúcia emphasised the importance of involving patients with rare diseases, such as primary immunodeficiencies (PIDs), throughout the entire healthcare ecosystem. From shaping research agendas to ensuring timely diagnosis, equitable access, and the development of innovative solutions, patient voices are key to creating a truly responsive and effective health system.

You can watch her full intervention here, where she brings forward a compelling case for a more inclusive, patient-driven, and innovation-focused EU health policy.