Lennox-Gastaut Syndrome (LGS) is a rare, severe form of epilepsy, most often diagnosed in early childhood. In the UK, LGS affects approximately 1 in 24,000 people, but its impact extends far beyond statistics. Those living with the condition, and their families, face complex seizures, drug-resistant symptoms and co-morbidities that make their treatment journey incredibly challenging.

Tomorrow marks LGS Awareness Day, giving us the opportunity to shine a light on these realities. Despite over half of epilepsy syndromes being classified as rare, too many people still experience limited treatment options and fragmented support systems, leaving patients and their families facing unmet needs and many unanswered questions.

Moving forward, change and collaboration is essential.

Working in partnership with UK Rare Epilepsies Together (UKRET), UCB conducted research into the challenges and possible solutions for those living with rare and complex epilepsies in the UK. Through this collaboration, we also funded a targeted literature review, stakeholder roundtables and development of a UKRET report: ‘Solutions to Enhance Access to Appropriate Care for Individuals with Rare and Complex Epilepsies in the UK.’

Combined with insights from patient advocacy leaders, healthcare professionals (HCPs) and policymakers, the report highlighted three core themes:

➡️ Diagnosis – often too slow, confusing and frustrating

➡️ Treatment – limited options, with many families not feeling heard

➡️ Coordination of care – particularly poor across services and during the transition to adulthood

Findings also highlighted a clear need for more integrated, stronger solutions including:

➡️ Closer collaboration and engagement from HCPs

➡️ Improved education for patients, families and clinicians

➡️ Better transitional support from paediatric-to-adult care

Now is the time to act.

At #UCBUK and #UCBIreland, we are committed to addressing the unmet needs of people living with epilepsy and working in partnership with the community to help drive change.

As well as continuing our collaboration with UKRET, we have also supported Epilepsy Action in the creation of their ‘Step Together’ toolkit, helping to assess local areas on how well they meet the needs of this community. Additionally, we have worked with Dravet Syndrome UK to develop a transition guide, which helps families navigate the challenges of their children with Dravet syndrome transitioning into adulthood.

There is still much to do, but momentum is building. By working together, we can ensure that people living with LGS and other rare epilepsies are seen, heard, and supported with the coordinated care they deserve.

To find out more, read UKRET’s full report on their website here 👉 https://shorturl.at/tYNhg

IE-DA-2500440 | October 2025