WHAT WE DO

The Trigeminal Neuralgia Association UK exists to:

Support. Inform. Educate. Evidence. Influence.

The Trigeminal Neuralgia Association UK is the established UK patient charity for people affected by trigeminal neuralgia and facial pain.

Founded in 1999 by a person living with trigeminal neuralgia and a medical consultant, TNA UK exists to provide support, trusted information, education and a stronger voice for patients, families, carers and professionals.

We support people throughout the patient journey, from first symptoms and diagnosis through medication, specialist assessment, surgical and procedural options, severe flare-ups and long-term management.

Our work is patient-led, clinician-informed, evidence-informed and independent.

Support and information

TNA UK provides practical support through our helpline, e-helpline, Regional Support Groups, befriending support, membership community, patient information, webinars and awareness work.

We help people affected by trigeminal neuralgia and facial pain feel less alone, understand the condition more clearly and prepare for better-informed conversations with healthcare professionals.

Families and carers may also need information and support.

TNA UK does not diagnose, prescribe or recommend individual treatment. We provide information, support and signposting.

National webinars hosted by Aneeta Prem 

TNA UK hosts national webinars led by Aneeta Prem MBE, bringing leading UK and international clinicians, researchers and other experts directly to patients, families, carers and professionals.

The webinars explain complex medical and research subjects in clear language, helping people understand symptoms, medication, referral routes, specialist care, surgical and procedural options, research developments and practical aspects of living with trigeminal neuralgia and facial pain.

They also give people who may struggle to travel because of pain, disability, distance or cost access to specialist knowledge from home.

Research and patient voice

TNA UK is committed to supporting ethical research and service improvement that could strengthen diagnosis, improve treatment and care, reduce the burden of trigeminal neuralgia and improve quality of life.

TNA UK has funded research, including doctoral research, and has allocated charitable funding towards research over the years.

Our role goes beyond funding.

We help bring lived experience into research through patient surveys, helpline insight, Regional Support Groups, member feedback, webinars, patient stories and direct contact with people living with the condition.

We can also help researchers understand patient priorities, improve patient-facing language, support meaningful patient involvement and communicate appropriately governed research opportunities to the patient community.

TNA UK has carried out two major patient surveys. Our latest survey, led by Aneeta Prem MBE, received more than 1,130 responses, providing important patient-reported insight into diagnosis, treatment, medication, daily life, work, family impact, mental health, access to specialist care and quality of life.

Patient-reported evidence does not replace clinical research.

It can reveal recurring experiences, unmet needs and questions that clinical research and healthcare systems need to investigate.

Turning patient experience into evidence

Every day, TNA UK hears directly from people affected by trigeminal neuralgia through our helpline, e-helpline, Regional Support Groups, webinars, surveys and member communications.

One person’s experience may identify an individual problem.

Hundreds of similar experiences may reveal a wider pattern.

We use that knowledge responsibly to identify unanswered questions, strengthen patient and professional education, inform research priorities and highlight gaps in diagnosis, treatment, referral and support.

Our patient evidence helps us focus attention on issues including earlier diagnosis, dental confusion, medication burden and side effects, specialist access, severe flare-ups, surgical and procedural outcomes, employment, family life, emotional wellbeing, isolation and long-term quality of life.

Research engagement in practice

TNA UK has practical experience of helping patients understand and engage with research opportunities in a responsible way.

Our research engagement can include national patient webinars, approved communications, patient information, support for meaningful patient involvement and briefing our helpline and Regional Support Group network.

We do not sell access to patients or hand over membership lists.

We do not give trial-specific medical advice, recommend individual treatments or tell someone whether they should take part in research.

Where we work with researchers, universities, NHS organisations, funders or appropriately governed commercial research partners, collaboration must be transparent, properly governed and clearly in the interests of patients.

Patient trust, independence, informed consent and data protection come first.

Explore TNA UK Research →

Medical Advisory Board

TNA UK is supported by a respected Medical Advisory Board with specialist expertise relevant to trigeminal neuralgia and facial pain.

The Board brings clinical knowledge into our information, education, awareness and research engagement work while TNA UK remains independent and patient-led.

This helps us provide medically responsible information written in language patients and families can understand.

Education for healthcare professionals

Earlier recognition of trigeminal neuralgia matters.

Some people experience prolonged diagnostic uncertainty, dental confusion, repeated appointments, treatment changes or delays before reaching appropriate specialist care.

TNA UK works to improve understanding among healthcare professionals and wider services.

We provide professional membership, training, education, webinars, patient insight and awareness work for medical and healthcare professionals.

Our professional education brings the patient experience into the room.

Clinical education explains the condition.

Patient experience shows what can happen when recognition, communication or care pathways fail.

Both matter.

Awareness and influence

TNA UK promotes awareness and understanding of trigeminal neuralgia and facial pain among the public, healthcare professionals, researchers, NHS bodies, funders, policymakers and neurological-sector organisations.

We speak for earlier recognition, clearer referral routes, informed treatment decisions, better access to specialist expertise, stronger patient involvement in research and better support for people living with severe facial pain.

Our awareness work uses patient stories, campaigns, webinars, events, public information, media and digital communications to make an often invisible condition better understood.

Awareness is not an end in itself.

It should lead to earlier recognition, better understanding, stronger research and better care.

Independent. Patient-led. Evidence-informed.

TNA UK’s responsibility is first and foremost to people affected by trigeminal neuralgia and facial pain.

We work constructively with clinicians, researchers, NHS organisations, universities, funders, other charities and appropriate commercial partners where collaboration can benefit patients.

But our independence matters.

We do not exist to promote a particular treatment, clinician, company or institution.

We exist to support people affected by trigeminal neuralgia, improve understanding of the condition and help ensure that patients are represented wherever decisions about information, research and care are being made.

Our purpose

TNA UK exists so that people affected by trigeminal neuralgia and facial pain are:

supported when they need help;

informed when they need answers;

heard when evidence is being gathered;

represented when research and services are being shaped; and

taken seriously.

From the first frightening symptoms to the search for better treatments, TNA UK is here throughout the patient journey.