Rare Syndromes

For someone living with epilepsy—or with a developmental and epileptic encephalopathy (DEE) such as Dravet syndrome or Lennox-Gastaut syndrome—life can shift in an instant and often remains in constant flux (or has been described by many as living through a constant storm).

Each of us is the product of our own unique combination of identities, experiences, and interests, ultimately informing, or at a minimum influencing, our perspectives on different virtues. This is something that I’ve been thinking more about when it comes to the importance of representation and inclusion in healthcare and the collective work we do, rooted in serving patients. Professionally I am passionate about bringing solutions to people with epilepsy and rare epilepsy syndromes.

February is Black History Month, a time to recognize the accomplishments and resilience of the Black community. At UCB, we are dedicated to addressing the stigma and misconceptions surrounding epilepsy, particularly among historically underserved populations. Unfortunately, many in the United States, especially those living with epilepsy, experience limited access to care and greater challenges.