ERN-RND, European Reference Network for Rare Neurological Diseases

The European Reference Network for Rare Neurological Diseases (ERN-RND) is a virtual network of 64 European expert hospitals and 4 affiliated partners in 24 EU member states working together to improve diagnosis, treatment and care of people affected by rare neurological diseases. In addition we also work together with highly active patient organizations. The network is coordinated by the University Hospital Tübingen, Germany. We currently cover the following disease groups: - cerebellar ataxias and hereditary spastic paraplegias, - choreas & huntington’s disease, - dystonias/paroxysmal disorders/neurodegeneration with brain iron accumulation, - leukodystrophies, - frontotemporal dementia and - atypical parkinsonian syndromes Our members include clinicians, researchers as well as patients to ensure that the patient voice is heard in everything we do. Our work is based on three important pillars: 1. Clinical Patient Management System (CPMS), 2. Knowledge generation and sharing and 3. European expert centres The CPMS is an online secure platform our clinicians across Europe use to discuss patient cases allowing the flow information to travel without having the patient move from the comfort of their home. Multidisciplinary panels of expert are convened in order to provide holistic advice. Moving on to our second pillar, members of the ERN-RND work together to produce knowledge in an effort to support clinicians in finding diagnosis and treatments in addition to helping patients and their families find the information they need and understand their clinical condition. Finally, ERN-RND is made up of healthcare centres which have been carefully selected and are experts in the different rare neurological disease groups we cover. You can also find us on X, Facebook and YouTube.