From 3rd – 4th OIFE was represented by Alessandra Tolaccia at the European Conference on Rare Diseases & Orphan Products (ECRD) in Prague. ECRD2026 opened with a clear message: Europe has the knowledge, the momentum and the community needed to act. Now it needs coordination, political will and implementation.

Held under the theme Rare Diseases in a Changing and Competitive Europe, the conference brought together patients, policymakers, healthcare professionals, researchers and industry – online and in Prague on 3–4 June – around a single, urgent message: Europe needs a coordinated, comprehensive EU Action Plan on Rare Diseases, and the time to act is now.

Workshop on the European Blueprint for Rare Diseases

Building on the work of a multi-stakeholder Core Group and a European Regional Task Force – developed in collaboration with Rare Diseases International since January – the pre-ECRD Blueprint Workshop held on 2 June presented and refined the European Blueprint for Rare Diseases, ahead of its publication in September 2026. Alessandra has been part of the task force, and took part in the very important workshop.

The ECRD conference

🫂 On Day 1, the sessions were about «Advancing Holistic Care for Rare Conditions»: Delivering better outcomes means looking beyond clinical care alone. Discussions focused on the value of patient-reported evidence, experience measures, registries and real-world data to better understand the full impact of rare diseases.

💚 On Day 2, «Mental Health and Wellbeing»: A clear call emerged to move beyond fragmented, episodic support and towards lifelong, integrated approaches that treat mental health as an essential component of rare disease care, not an afterthought. Prevention, resilience and quality of life must sit alongside physical health throughout the care journey.

Two key points emerged:
➡️ Improving outcomes for people living with rare diseases requires healthcare systems that are more coordinated, more person-centred, and better equipped to respond to the realities of rare disease throughout life.
➡️ Involving patients is absolutely essential to drive more meaningful insights, better outcomes, and true innovation.

OIFE part of the RealiseD panel

One June 4th, Alessandra was part of the RealiseD panel, which is a multi-stakeholder public private partnership designed to explore how evidence generation can evolve alongside innovation. In the panel, the discussion explored how evidence generation can evolve through innovative initiatives such as the RealiseD project.

Learn more about the ECRD conference: see the full programme here and read the article about the Highlights from Prague: ECRD 2026 sets the course for coordinated action.