Category: Training & Education

This study investigates possible measures that could be taken at EU level to address these challenges. It finds significant European added value in harmonising coordination and access across the 27 Member States, mainly in terms of improved diagnostic tools and availability of medical treatment, better health outcomes, particularly lower infant mortality, and improved well-being of family members and caregivers.
Published on 14 December, this WHO technical document maps global trends in registered clinical studies using human genomic technologies from 1990 to 2024, including patterns of inclusion and equity.
A short webinar to launch a new, friendly guide to Equality, Diversity and Inclusion (EDI) in Public and Patient Involvement (PPI).
The training responds to the growing need for patient advocates to understand data management, ethical considerations and the role of AI in rare disease research.
13 January – 10 February 2026 | Online webinar series to advance best practices in clinical trial design for rare and ultra rare diseases.
EURORDIS champions patient-centred innovation in rare disease research
Three days in Brussels help advance the European Declaration on Rare and Complex Diseases
Amsterdam and online, convening clinicians, scientists and advocates to share progress and the power of patient led policy to improve diagnosis and care.