On the 3rd and 4th June 2026, FraXI’s President Dr Kirsten Johnson attended 2026 ECRD  organised by EURORDIS-Rare Diseases Europe in collaboration with Orphanet at the O2 Universum Congress Centre in Prague and online. 

ECRD is the world’s largest patient-led rare disease policy event, and this year, the theme was Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases.

This edition of the conference marked a pivotal milestone in a broad, inclusive,

multi-stakeholder process towards the launch of a European Blueprint for Rare Diseases – a shared vision designed to deliver lasting impact for people living with rare conditions across Europe by encouraging collective effort and dialogue, fostering shared ownership among patients, policymakers, clinicians, researchers, industry, and health system leaders. 

  You can read more about the European Blueprint here. 

Kirsten chaired a session on mental health titled Rethinking Mental Health in Rare Conditions: From Undefined Challenges to Collaborative Solutions on the 4th of June. She was joined by experts from around the world to discuss what mental health challenges look like for people living with rare diseases (PLWRD) while drawing attention to how they are often misunderstood, underresearched, and excluded from integrated care models. 

Kirsten says, “There is now growing evidence and recognition of the impact living with a rare condition can have on quality of life, affecting wellbeing, mental health and relationships. This session delineated how good biopsychosocial care can greatly improve outcomes, with clinicians, researchers and the wider rare disease ecosystem now recognising the importance of holistic care in delivering treatment and support.”