The European Conference on Rare Diseases and Orphan Products (ECRD) 2026 will take place on Wednesday 3 and Thursday 4 June in Prague, and we’re pleased to confirm that Rebecca Leary, Senior Project Manager at PaLaDIn partner Newcastle University, will be in attendance to represent the project and explore collaborations for rolling out tools and learning from PaLaDIn to other rare disease communities.
ECRD is a particularly important event in our calendar as it is the largest patient-led, policy-shaping event on rare diseases in all of Europe, and it attracts a broad range of stakeholders including clinicians, researchers, policymakers, regulators, industry representatives, patient advocates and, of course, the patients themselves.
One of our primary goals with PaLaDIn is to gather comprehensive patient data – via our state-of-the-art Interactium® data platform – on health status, experiences, and more, and to ensure that patients’ voices are always at the heart of important healthcare decision-making. By attending ECRD this year, we hope to share learning from our experiences within PaLaDIn in the neuromuscular field that could also benefit and be adopted by the wider rare disease community.
The theme of this year’s ECRD is “Rare Diseases in a Changing and Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases”. In addition to the main event in Prague, it is also possible to attend online.
Registration for ECRD 2026 is open now – see here for more details. Already registered? We look forward to seeing you there!
