ERN-RND ePAGs Visiting Crona Clinic in Tübingen

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 but knowledge does.

The diseases ERN-RND covers are:

ERN-RND unites 32 of Europe’s leading expert centers in 13 Member States and includes highly active patient organizations. Centers are located in Belgium, Bulgaria, Czech Republic, France, Germany, Hungary, Italy, Lithuania, Netherlands, Poland, Slovenia, Spain and the Netherlands.
The European Reference Networks (ERNs) are virtual networks connecting healthcare professionals around Europe with expertise in rare diseases which allows them to discuss a patient’s diagnosis and care, with their consent, via an online IT platform (CPSM)

An important partner in the reference network are the different patient advocacy groups. Last week of January the ePAG (European Patient Advocacy Group) representatives met at the Crona Clinic in Tübingen, Germany. Network Coordinator Professor Holmes and his team informed about various network activities and we discussed how we can work together. Some of the upcoming work is to create Patient Journeys for the various diseases. We will also develop promotional material that we in the different disease groups can bring to meetings and congresses we attend. We will share news and events for each other to raise awareness of the diseases and the work we do.

A popular activity are the different webinars. This is a joint educational programme launched by the two ERNs for Rare Neurological Diseases and Rare Neuromuscular Diseases (ERN-EuroNMD) in collaboration with EAN (the European Academy of Neurology). The goal is to share knowledge on rare neurological, movement and neuromuscular disorders and fill the gap in the educational offer in these fields. The target audience are clinical specialists (neurologists, paediatric neurologists, geneticists), neurology trainees and other paramedical staff involved in patient care. The webinars will treat different aspects of the disease groups covered in our networks such as clinical features, disease diagnosis and management, use of scales and flowcharts, and possible therapeutic interventions. Topics relevant for adult and paediatric cases will have equal share in our curriculum.All webinars held can be found on the ERN-RND Youtube channel https://www.youtube.com/channel/UCLpEdEyhGnQpdmLLzqNXkTg

The next upcoming webinar is on 4 February at 3-4 PM CET (Central Europe Time)with Prof Kailash Bhatia from UCL Queen Square Institute of Neurology in London and he will make a presentation on
“Clinical evaluation of dystonia”. You can sign up to the webinar here: Here is the link to sign https://zoom.us/webinar/register/5615746883769/WN_rEy5ChrUTL2sZRMhS-kvOg

For more information on the ERNs, background and what they do, go to:

https://ec.europa.eu/commission/presscorner/detail/en/MEMO_17_324BACKGROUND

Monika Benson
ePAG Representative ERN-RND
Dystonia Europe