Dr Paola Giunti to lead European Reference Network for Rare Neurological Diseases for UCLH

The EU has approved a European Reference Network for Rare Neurological Diseases which will be led for UCLH by Dr Paola Giunti, paving the way for collaboration between Member States, the pooling of expertise and knowledge sharing between healthcare professionals across borders.

Providing highly specialised treatment or care for patients who have complex conditions can be challenging. This is especially true when the prevalence of such conditions is low, as is the case for rare diseases. The challenge is due to both the scarcity of expertise and to the scattering of small patient populations across the EU, sometimes in isolated locations where expertise does not exist or cannot be accessed.

Dr Paola Giunti 

European reference networks aim to serve as research and knowledge centres, updating and contributing to the latest scientific findings, treating patients from other Member States and ensuring the availability of subsequent treatment facilities where necessary.

Dr Giunti’s research focus is ataxia; in 2005 she established The Specialist Ataxia Clinic, created in partnership with patients and based at the National Hospital for Neurology and Neurosurgery. This is the first Ataxia Centre in the UK to be accredited by the patient support organisation Ataxia UK. On this model other ataxia centre have been established. These are Centres of Excellence, where the aim is to provide ataxia patients with the best possible quality of care and a co-ordinated service combining diagnosis, treatment, support and research.

As a direct result of the European Reference Network for Rare Neurological Diseases award Dr Giunti anticipates more patients will be referred to UCLH and that this will enhance basic and translational  research in rare disorders.