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Over the years, we have had the opportunity to work with various partners, in the form of a collaboration or a sponsorship. We have worked together with ataxia patient organisations from different countries like FARA, GoFar, CureSCA, CureDRPLA, ARSACS Foundation. We have been funded by large funding bodies such as the MRC, NIHR, BRC, JPND, and the EC. At the European level we have been involved in an initiative with the European Brain Council (EBC) called the Value of Treatment project.
The Ataxia centre was accredited by the patient organisation Ataxia UK in 2005. We have also received in 2023 an accreditation for a paediatric ataxia clinic as a new service in our centre. To achieve accreditation, centres have to comply with criteria devised following consultation with patients with ataxia and clinicians with an expertise in ataxia, to provide 'excellence of care for the diagnosis and management of the ataxias and access to a wide range of integrated services, as well as links to research programmes'. Ataxia UK has been a crucial partner and sponsor for the work achieved at the Ataxia centre from the start. Indeed Ataxia UK has funded several research studies at the centre and carry on supporting the research done here towards better treatment and better care for people with ataxia.
The Ataxia centre is registered as the UK 'expert centre' for ataxias with the European Reference network for rare neurological diseases (ERN-RND). 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. The network also aims to develop a comprehensive database to better understand these conditions, and create a platform for testing potential treatments. Prof Paola Giunti is the UK representative on the board of the network.
Our Centre has been recognised internationally and accredited in 2023 as Ataxia Centre of Excellence by the large patient organisation National Ataxia Foundation based in the US. We are the first centre in the UK to receive this accreditation. There are only six centres in the world (outside the US) to have this recognition. This is a significant achievement for our centre, and we are now part of a network of Ataxia clinical experts that can provide support, guidance, and new opportunities for collaboration for improved ataxia clinical care and research globally.
