The annual conference of Euro-ataxia (the federation of ataxia charities in Europe) took place in Frankfurt in November, hosted by the German ataxia charity DHAG. It was supported by Ataxia UK, who organised the programme and secured sponsorship from the pharmaceutical company Biomarin. A total of 20 Euro-ataxia representatives from 14 different member groups attended (including two new members): a very good level of participation. The annual meeting is a useful opportunity to share information amongst patient groups in different countries, as well as to have updates on research. Please see the programme (below) for more information.
Importantly, we also collaborated with the project coordinators of the European Friedreich’s ataxia research consortium (EFACTS) to hold their annual meeting at the same venue the day after Euro-ataxia. This allowed information to flow between groups, ten researchers from EFACTS, also attended the Euro-ataxia conference. Together with representatives from two pharmaceutical companies (Biomarin and Reata) this made it a diverse group and encouraged very interesting discussions, such as a discussion session focusing on the role of patient groups and patients in research. A Patient Charter resulting from this meeting is now being prepared.
A representative from the European Reference Network for Rare Neurological Diseases (ERN-RND) gave an overview of what has been achieved to date by this network. This is an EU-funded initiative with the aim of creating a network of collaborating specialist centres within EU members states that pool expertise and help to ensure that knowledge is shared. Specialist centres in a number of rare neurological conditions (including the ataxias) around Europe can be members of this network if they comply by a number of criteria. The ERN work is in three areas:
- Knowledge dissemination (guidelines, healthcare pathways, education and training)
- Knowledge generation (sharing experience and expertise, research and innovation)
- Virtual healthcare (specialist advice, discussion of complex cases across Europe)
One of the network’s projects is to create medical guidelines for each condition. As part of this aim, the ERN-RND examines currently available guidelines and, if deemed of good quality and developed in appropriate ways, they are given an ERN ‘stamp of approval’. We were delighted to hear that on the 7 November the ERN-RND affirmed the value of the Ataxia UK Medical Guidelines in management of the ataxias.
Regarding any implications of Brexit and what would happen to UK clinicians who are part of many of these networks, it was agreed by the ERN-RND that the UK would form a privileged partnership, and thus the situation should not change.
Euroataxia meeting 2018 programme (list of talks)
- Cathalijne van Doorne (Euroataxia President) and DHAG representative ‘Welcome’
- Carola Reinhard (University of Tübingen) ‘Update on the activities of European Reference Network Rare Neurological Disorders activities.’
- Prof Thomas Klockgether (University of Bonn) ‘SCA Global Initiative’ update and discussion
- Dr Julie Greenfield (Ataxia UK) ‘European Brain Council Value of Treatment project – ataxia study’
- Dr George Auburger (Gothhe University, Frankfurt) ‘Approaches for the developement of therapies for SCAs’
- Prof Stefan Zielen ‘Goethe University Frankfurt. ‘Recent perspectives in Ataxia telangiectasia research’
- Dr Jorg Schultz (replacing Massimo Pandolfo) (University of Aachen) ‘Update on EFACTS
- Dr Jorg Schultz ‘Nicotinamide trial update’
- Prof Michael Strupp (University Hospital Munnich) ‘Episodic ataxia and cerebellar ataxia trials in Munnich’
- Patient groups and pharmaceutical companies working together
- Introductions from pharmaceutical company representatives from Biomairn and Reata.
- Kara Eichelkraut (Senior Manager, Patient Advocacy, Reata) ‘Update on the Reata MOXIe Program: A Clinical Trial for Friedreich’s Ataxia’
- Discussion session between patient groups, researchers and pharmaceutical companies interested in ataxia
Posted on 27/11/2018
