20 October 2026: A new UK charity has launched, dedicated to improving our understanding of trigeminal neuralgia (TN) and ensuring that every patient, wherever they live, has access to a diagnosis, followed by care from a multidisciplinary team
TN is a rare, long-term condition that causes sudden, recurring episodes of excruciating facial pain, often triggered by light touch and has a profound impact on sufferers' quality of life. It is estimated to affect around 45,000 people in the UK, most commonly those aged 55 to 70, yet patients often face delayed diagnosis, misdiagnosis and treatment that is inappropriate or ineffective.
The Institute has been established so that every person living with TN has an equal opportunity to access timely, evidence-based care that is delivered with expertise, compassion, and understanding. Its work will centre on three aims:
- Discover: promote research into the causes, diagnosis and management of TN, supported by a new registry of patients and healthcare providers to audit outcomes
- Care: provide tools for a diagnostic service and signpost patients to centres of excellence across the country
- Learn: train more healthcare professionals to provide effective care and educate patients about available sources of information
Simon Tate, Chair of the Trigeminal Neuralgia Institute, said: "Trigeminal neuralgia causes excruciating pain, yet too many people face delays in receiving an accurate diagnosis and effective treatment. The Institute was founded on the vision of Professor Joanna Zakrzewska, a leading authority who has spent decades treating people with TN and advocating for better care pathways. By uniting research, expert diagnosis and healthcare professional training, and by working closely with patients, clinicians and centres of excellence nationwide, we believe the Trigeminal Neuralgia Institute can help people receive the right care sooner and receive better support.
We would like to thank our launch event sponsors, Noema Pharma and Trames Bio, as well as Dame Kate Bingham and Dr Clive Dix, whose support has made this launch possible."
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For more information, please contact: info@tninstitute.net
About the Trigeminal Neuralgia Institute:
The Trigeminal Neuralgia Institute is a UK charity dedicated to ensuring that every person living with trigeminal neuralgia has an equal opportunity to access timely, evidence-based care, delivered with expertise, compassion and understanding. It will promote research, provide tools for a diagnostic service and train healthcare professionals, working with centres of excellence across the UK. It will also work to improve awareness, advocate for better services and support patients, families and healthcare professionals, so that people affected by TN receive the high-quality care, information and support they need, without unnecessary delays in diagnosis or treatment. Registered charity number: 1204273. www.tninstitute.net
About Trigeminal neuralgia
Trigeminal neuralgia (TN) is a rare, long-term condition that causes sudden, recurring episodes of excruciating facial pain. The pain can have a profound effect on quality of life, and many people also experience anxiety and depression. Patients often face delayed diagnosis, misdiagnosis, and treatment that is inappropriate or ineffective. Earlier diagnosis and the right treatment pathway would significantly reduce both the clinical and psychological burden.
