Epilepsy Awareness Month: Increasing Knowledge, Support and Advocacy

In November, UCB joins the world in recognizing Epilepsy Awareness Month, which commenced on November 1st with International Lennox-Gastaut syndrome (LGS) Awareness Day. More than one million children and adults worldwide live with LGS, a severe, rare epilepsy syndrome that is often difficult to treat.

At UCB, we have a legacy commitment to the epilepsy community and remain dedicated to developing better solutions that address unmet family needs. Through our engagement with people living with epilepsies, like LGS, we often hear that it can be isolating — both physically and mentally for patients and caregivers. This risk underscores the critical importance of a strong sense of community and network of support that patient advocacy groups provide.

With recruitment support from the LGS Foundation (LGSF), UCB conducted a caregiver advisory board to better identify key issues affecting the needs of caregivers and their diagnosed loved ones through the journey of diagnosis, management, and treatment. Research findings were presented at NORD’s Rare Disease and Orphan Products Breakthrough Summit. With more than 900 rare disease advocates, experts, and stakeholders from around the world present, LGS was represented in the exhibit hall along with other pressing issues facing the rare disease community.

The research findings presented at the Breakthrough Summit highlighted the challenges faced by caregivers of people with LGS, from navigating multiple misdiagnoses to feeling overwhelmed by the complexity of the condition. Caregivers underscored the importance of early diagnosis, a trustworthy care team and peer-to-peer support groups to better care for someone with LGS. When asked about educational resources, patient advocacy groups, especially the LGSF, were the most valued source of information used by caregivers of people with LGS.
 

“The research findings we presented at NORD highlight the importance of supporting and connecting caregivers and families who live with the challenges of epilepsy and seizure disorders every day. As an additional outcome of this research, we launched Shine Forward with LGS (www.shineforwardwithlgs.com) as a complimentary resource to LGSF, to provide education, tips, and tools to support the entire LGS family, built by caregivers, for caregivers.” – Ross Lu, Study Investigator, Epilepsy & Rare Syndromes at UCB

“As demonstrated by the insights presented at NORD, supporting the epilepsy community extends well beyond treating the seizures.  Extending care support services and holistic programs to persons living with epilepsy and their families is essential.” – Andrea Wilkinson, Study Investigator and Global Patient Engagement, Epilepsy & Rare Syndromes at UCB

To kick off Epilepsy Awareness Month, our global and US teams also participated in the 11th Annual Epilepsy Awareness Day at Disneyland^® in California to bring expert health providers, disease education and solutions to patients and caregivers. With the backdrop of fun and festivities for children and their families, this event provides an opportunity to unite thousands from the epilepsy community year after year.
 

“Epilepsy Awareness Day at Disneyland brings many leaders and families together from the epilepsy and rare syndromes community. Having the time and space to engage in a meaningful way is quite special.” – Laurie Bailey, US Patient Partnership Lead, Corporate Affairs at UCB

Epilepsy is one of the most common neurological disorders, affecting people of all ages. UCB is committed to transforming outcomes for people living with epilepsy and rare epileptic syndromes such as LGS. We are honored to share these special and meaningful moments with patients, their loved ones, and the advocacy community leading up to and during Epilepsy Awareness Month. It is a critical reminder of the significant unmet needs that remain and the importance of our work today and tomorrow.