EURORDIS–Rare Diseases Europe and MEP Nicolás González Casares, rapporteur of the European Parliament’s draft report calling for an EU Action Plan on Rare Diseases, are organising an event to bring together policymakers, patient representatives, clinicians and experts at the European Parliament.
🗓️ Date: 23 April 2026
📍 Location: European Parliament, Brussels
⏰ Time: 09:00-11:00 CEST
Rare diseases affect over 30 million people across Europe, yet patients continue to face significant challenges, including delayed diagnosis, limited treatment options, fragmented care pathways and unequal access to innovation across Member States. These structural gaps highlight the need for a more coordinated and equitable European approach.
As the European Parliament advances work towards a future European framework on rare diseases, it is essential that policies reflect the lived experience of patients. Patient organisations and advocates play a critical role in identifying unmet needs and shaping solutions that are both effective and equitable.
This event aims to provide a dedicated space for patient organisations, advocates and healthcare professionals to exchange perspectives and contribute to the development of future EU policy on rare diseases.
Confirmed speakers include Simona Bellagambi, Vice-President of EURORDIS–Rare Diseases Europe, alongside Noah Higón, a rare disease advocate, who will deliver a keynote on the patient perspective and contribute to the panel discussion. The panel will also feature Ángel Carracedo, a leading expert in genomics and diagnosis, and and advocate Ricardo Gil.
Objectives
Ensure patients’ perspectives inform EU policymaking on rare diseases
Identify key gaps in diagnosis, care and access across Europe
Explore the role of innovation, including genomics
Foster dialogue between EU institutions and the rare disease community
Participants
Members of the European Parliament and other EU policymakers
Patient advocates and organisations, including EURORDIS
Clinicians, researchers and other experts
The event will provide concrete input to ongoing parliamentary work and help ensure that future EU action on rare diseases is inclusive, equitable and patient-driven.
Register to attend the event by Monday 20 April!