Personal Statement of Nayana Lahiri

I am a UK NHS Consultant in Clinical Genetics specialising in Neurogenetics, particularly HD, inherited neurodegenerative Disease and Epilepsy with a strong focus on clinical leadership, education and patient advocacy.

I became embedded in the HD community through my role in the TRACK-HD project at UCL under Professor Sarah Tabrizi’s guidance and have gone on to establish and lead the HD Multidisciplinary clinic at St. George’s University Hospital, London, develop a service model for Huntington’s Disease and a clinical research and clinical trial infrastructure.

In the UK, I lead the UK HD predictive testing consortium and am a trustee for the UK patient charity; The Huntington’s Disease Association.

I have been a member of the EHDN since 2008 and I have co-chaired the Genetic Counselling and testing working group since 2018. I was invited to establish the Incidental Findings Task Force in 2022. I have worked closely with a number of other working group leads, the EC and international stakeholders through this work.

I am passionate about the EHDN mission to advance HD research, conduct clinical trials and improve care for people affected by HD. It is crucial for the EHDN to maintain a focus on symptomatic management and psychological support for patients and families now whilst preparing for a future with HD disease modifying therapies and ensuring access to those therapies. Future clinical trials are likely to involve those closer to symptom onset and the EHDN will have a crucial role in working with local health systems and regulators, industry partners, patient groups to prepare for new treatments. I am honoured to be asked to stand for election as a member of the Executive Committee I would bring my expertise as a Clinical Geneticist involved in all stages of the HD patient journey with a focus on the ‘at risk’ period.