The National Tremor Foundation collaborated with partners from across Europe at a key international meeting on essential tremor, held in Brussels on 19th November and organised by Insightec

The event followed last year’s inaugural conference, where more than thirty organisations signed the Joint Declaration on Essential Tremor.

The NTF continues to be engaged with European partners, helping to ensure that people affected by essential tremor are included in international policy conversations. This year’s meeting, Driving Access: Ensuring Fair Access to Treatment for Essential Tremor Patients, brought together policymakers, clinicians and patient advocates to push for coordinated action on one of the world’s most common but least recognised neurological conditions.

Essential tremor affects an estimated sixty million people worldwide, yet up to one third of those living with the condition remain undiagnosed or misdiagnosed. Speakers throughout the event emphasised the need for better awareness, equitable access to treatment and stronger collaboration across borders.

A key part of the discussion focused on treatment options available to people living with essential tremor. Whilst innovative technologies such as MRI guided focused ultrasound are becoming more widely recognised, not all patients are eligible for these procedures - including children and individuals with specific medical considerations. Ensuring that all treatment pathways are understood, accessible and fairly assessed remains an important priority for the NTF.

Representing the UK patient community, NTF Chair Kitty Reilly joined European policymakers, patient organisations, neurologists, and those with lived experiences of essential tremor.

Kitty said: “It was such a privilege to connect with you all. United in making a difference. It’s very humbling on both a personal and professional level. Being in a room with people so committed to improving the lives of those with essential tremor reinforced just how powerful collaboration can be. Every conversation, every shared experience, and every commitment made here brings us a step closer to the visibility, recognition and fair access our community urgently needs. I’m honoured to represent the UK patient voice and to stand alongside colleagues across Europe who are driving meaningful, lasting change.”

Four shared priorities were set out:

  • Formal recognition of essential tremor as a distinct disease
    • Development of a Europe wide strategy for brain health
    • Fair national reimbursement systems to end unequal treatment access 
    • A coordinated Europe wide brain plan bringing together patients, academia, policymakers and industry

The meeting was hosted by Vytenis Andriukaitis, Member of the European Parliament, and included contributions from several European lawmakers, including Tomislav Sokol, who highlighted practical steps to improve access to innovative treatments such as incisionless MRI guided focused ultrasound.

Maarit Matjussi, President of Essential Tremor Europe, reinforced the patient perspective: “For too long, essential tremor has been overlooked, leaving patients isolated and underserved. By working together, we can ensure that no patient is left behind simply because of where they live.”

The event concluded with a shared commitment to strengthen last year’s Joint Declaration and continue building a unified European framework for brain health, ensuring that the essential tremor community has a consistent and visible voice.

Growing international attention also shaped the discussions, including the widely covered story of Lord Julian Fellowes, the creator of Downton Abbey and patron of the NTF, who has spoken publicly about undergoing MR guided focused ultrasound treatment and the powerful impact it has had.

Maurice R Ferré, MD, Insightec Chairman and CEO, added: “Hearing directly from patients and policymakers helps ensure that innovation leads to real impact. We remain committed to making transformative incisionless focused ultrasound accessible to everyone who can benefit from it.”

As these conversations progress, the NTF will continue working with partners across Europe and beyond to champion greater awareness, improved support and fair access to treatment for everyone affected by essential tremor.

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