ERN‑RND Scientific Symposium: Registries for Rare Neurological Diseases

2 Sep, 2026

On 10 October 2026, the European Reference Network for Rare Neurological Diseases (ERN‑RND) will host a dedicated scientific symposium focused on one of the most important foundations of rare disease research: registries. 

The event will bring together clinicians, researchers, patient organisations and data specialists to explore how high‑quality registries can transform understanding, improve care pathways and accelerate therapeutic development across rare neurological conditions.

The programme will highlight how registries capture real‑world data, map disease progression, identify unmet needs and support clinical trial readiness. It will also showcase Europe’s expanding network of registries and the growing emphasis on harmonised data standards, interoperability and patient‑centred design.

For the mitochondrial community, this event is highly relevant. Strong registries ensure that patient experiences, clinical outcomes and long‑term data are visible to researchers and regulators — helping shape future natural history studies, clinical trials and treatment development.