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. More information can be found on the Euro-ataxia website (www.euroataxia.org).
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. The meeting was also an opportunity to discuss the ‘Value of Treatment’ project (see article above) and to find patient groups and researchers to get involved.
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; from the UK, the London Ataxia Centre is part of the ERN. 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.
Posted on 01/03/2019