ERN-RND expert centres in Paris

University Hospital Henri Mondor, National Reference Centre for Huntington’s Disease, France Pitié-Salpêtrière Hospital, National Reference Centre « Neurogenetics », Paris, France

Meet the members: Astri Arnesen

In this edition of “Meet the members”, we interview Astri Arnesen, ERN-RND ePAG representative and president of the European Huntington Association. She will tell us more about her work within ERN-RND and her expectations for the network. 1. What is your profession (department, affiliation, etc.) and your medical expertise or specific field of interest? I … Continue reading “Meet the members: Astri Arnesen”

Meet the members

Mary Kearney, Friedreich’s Ataxia Research Alliance Ireland (FARA), Patient Advocate Robert Rusina, Thomayer Teaching Hospital and Charles University in Prague, Czech Republic Nataliya Grigorova, Bulgarian Huntington Association, ERN-RND ePAGs group coordinator Johannes Levin, Department of Neurology, Ludwig-Maximilians-University Munich, Germany Bart van de Warrenburg, Radboud university medical center, Nijmegen, the Netherlands Astri Arnesen, President of the … Continue reading “Meet the members”

ERN-RND Registry

To establish a demographic platform for collection of relevant core patient information covering children and adults To collect information on how many patients per Disease Group covered by ERN-RND are treated across Europe To improve the medical care of patients in particular with regard to diagnosis and standards of care To facilitate participation of patients … Continue reading “ERN-RND Registry”

Past webinars

2023 | ERN-RND 14 March | FTD- in whom, when and how genetic testing should be applied Speaker: Laura Donker Kaat, Erasmus Medical Center Rotterdam, Netherlands Slides are coming soon Recording coming soon   07 March | Towards precision medicine in NBIA Speaker: Manju Kurian, GOS Institute of Child Health, University College London, UK Slides … Continue reading “Past webinars”

17 – 19 June | ERN-RND Annual Meeting 2019

The ERN-RND Annual Meeting is taking place in Siena, Italy on the 17-19 June 2019. The coordinating members, clinicians and researchers from ERN-RND expert centres across Europe, ePAG patient representatives and industry representatives will attend. Please find the full meeting agenda here. Monday 17 June: Scientific symposium Poster session ePAG representatives meeting Tuesday 18 June: … Continue reading “17 – 19 June | ERN-RND Annual Meeting 2019”

About us

A European Reference Network (ERN) is a virtual network comprised of healthcare professionals spread around Europe. Their objective is to tackle complex or rare diseases and conditions that necessitate highly specialised treatment and a concentration of knowledge and resources. Indeed, often a disease is so rare that expert knowledge is not available in the patient’s … Continue reading “About us”

Disease networks and study groups

The listed disease networks and study groups are external networks and groups, which are leaders in the field of research for these disease groups. ERN-RND’s work is based on and complimentary to the work being done by these networks.


  The Disease Knowledge pages provide useful information about the different disease groups listed below that the ERN-RND covers. You can visit a Disease Knowledge page by clicking on the specific disease group under the “Disease Knowledge” menu above.   Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs) Chorea & Huntington’s disease Dystonias, Neurodegeneration with Brain … Continue reading “DISEASE KNOWLEDGE”