Resources
VIP Sibling
We partnered with the Lennox-Gastaut Syndrome (LGS) Foundation and Dravet Syndrome(DS) Foundation to compile the Siblings Voices Survey to assess how children adapt to growing up with siblings living with a rare form of epilepsy and created our VIP Sibling Project that includes resources to support siblings, parents, and caregivers of people living with a rare epilepsy syndrome.
SUDEP
We worked with more than 20 organizations committed to this community such as American Epilepsy Society, Danny Did Foundation, and the Epilepsy Foundation, and Child Neurology Foundation (CNF), to support the creation a toolkit of resources to raise awareness of potential causes of SUDEP.
Digital Care Transformation
We continuously seek to innovate for the future creating our Digital Care Transformation incubator. Through this initiative, we support healthcare startups developing innovative solutions for epilepsy, such as NeuroHelp and Epihunter, using AI and wearable technology. We have also invested in detection and monitoring device companies like Neurava, Nextsense, Eysz, and Byteflies who are developing advanced technologies to improve seizure detection and monitoring, elevating the standard of care.
Precision Medicine
We are shifting our development approach, to include more targeted, precision based interventions – which is critical to support those who have historically been difficult to treat. With acquisitions such as Engage Theraputics, and investments in collaborations with GliaPharm and Praxis Precision Medicines we are complementing our in house efforts to help identify new therapeutic targets in epilepsy and explore the discovery of small molecule therapeutics as potential treatments of KCNT1 related epilepsies) We do this with an eye toward developing potentially disease modifying treatments that could one day lead to a cure for epilepsy.
Using RWE to Understand
Seizure Clusters
We’re collaborating with Le Bonheur Children s Hospital, the Wisconsin Health Information Organization (WHIO), and Yale University to examine the impact of seizure clusters on patient and caregiver quality of life, leveraging the power of education and real world evidence (RWE) to address this research gap, expand awareness, and enact positive change in the health outcomes of individuals with seizure clusters.
Health Equity
We purposefully partner with patient led and focused organizations to increase connections across the healthcare industry, address health disparities in underrepresented and underserved communities such as the Hispanic and black communities, and help ease burdens people living with epilepsy and their caregivers are facing.
Epilepsy Advocate™
Created in 2006 EpilepsyAdvocate is a community of people living with epilepsy, their family members, and their caregivers. When it comes to epilepsy, knowledge is power. Whether you’ve had epilepsy for years or you are newly diagnosed, the more you know, the more you can do to try to control epilepsy and live life on your terms.
Exploring Epilepsy Today
Let’s Explore Epilepsy Together.
We believe that the health gaps among social, economic, racial, age, ethnic, and geographical groups that affect millions of Americans living with epilepsy are simply not acceptable. Our goal is to raise the standard of care for the communities we serve, which starts with informing you.
UCB Family Epilepsy
Scholarship Program
Our annual UCB Family Epilepsy Scholarship program offers educational scholarships to people living with epilepsy, family members, and caregivers. Since 2004, UCB has awarded over $3 million in scholarships to more than 600 recipients who have applied their awards to undergraduate and graduate studies.