ERN-RND Patient Journeys

Patient Journeys are a useful educational tool for those with the rare disease. In addition, it is an ideal tool for doctors who are not experts in the area, accident and emergency, general practitioners and other health care professionals. (Mary Kearney, patient advocate at the ERN) Patient Journeys  are info-graphical overviews that visualize patients’ needs … Continue reading “ERN-RND Patient Journeys”

Пътят на пациента – болест на Хънтингтън

 “Пътят на пациента” са информационни графики, които визуализират нуждите на пациентите при лечението на тяхното рядко заболяване. Тъй като материалите  “Път на пациента” са разработени от гледна точка на пациента и неговите близки, те позволяват на лекарите ефективно да отговорят на нуждите на пациентите с редки болести.   Инфографиките отчитат, че нуждите на пациентите могат … Continue reading “Пътят на пациента – болест на Хънтингтън”

ERN-RND ANNUAL MEETING 2022

From September 29th to October 1st the annual meeting took place at the CRONA-Kliniken in Tübingen. We are happy that besides the online participants also many on-site participants were present. We would like to thank all participants again for the inspiring presentations, discussions and the valuable exchange. Astri Arnesen, ERN-RND ePAG representative and president of … Continue reading “ERN-RND ANNUAL MEETING 2022”

Webinars

Disease-SpecificNeuro­reha­bilitationAdvanced TherapiesPaediatricClinical StudiesDeep Brain StimulationERN-RND webinars in collaboration with ERN EURO-NMD and EAN ERN-RND provides free educational webinars on rare neurological and neuromuscular diseases – in collaboration with the European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) and the European Academy of Neurology (EAN). The goal is to share knowledge on rare neurological, movement and … Continue reading “Webinars”

Welcome to ERN-RND

The ERN-RND is a European Reference Network established by the EU to support patients and families affected by rare neurological diseases (RND) which requires much specialised knowledge, treatment and resources. Some diseases are so rare that the necessary knowledge might not be available in the patient’s nearest health centre or country. The patient doesn’t travel … Continue reading “Welcome to ERN-RND”

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

Establishment and operation of an ERN based patient registry are core activities of all ERNs and lie within the healthcare scope of the ERNs. As such ERN registries have two complementing functions. They are an important component of a digitalised European healthcare and they are drivers of the associated transformation of healthcare. The ERN-RND registry … Continue reading “ERN-RND Registry”

Past webinars

2024 | ERN-RND 12. March 2024 | The spectrum of genetic synucleinopathies | Leonidas Stefanis Speaker: Leonidas Stefanis University of Athens Medical School, Athens, Greece Slides coming soon Recording coming soon 27 February 2024 | Neuropsychological assessment in primary progressive aphasia – recommendations and pitfalls in clinical practice | Lize Jiskoot Speaker: Lize Jiskoot Erasmus … 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”