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The vital role of patient advocacy groups in navigating rare and complex epilepsies

Posted by
Andrea Wilkinson, Global Patient Engagement, Epilepsy & Rare Syndromes

The Rare and Complex Epilepsies patient community play a crucial role in gathering valuable patient and caregiver experience data and providing essential information and support resources throughout the diagnosis and management journey.

Within the Rare and Complex Epilepsies patient community, there is a significant contribution to identifying unmet needs and developing tailored solutions to support families coping with the diagnosis. UCB recently collaborated with the Dravet Syndrome Foundation to investigate the unique challenges faced by caregivers when recently or newly diagnosed. Together, we co-created a survey deployed to caregivers with children <4 years of age living with Dravet syndrome to better understand the unmet needs and experiences of caregivers early in their journey. The survey findings were recently co-presented at the 52nd annual Child Neurology Society meeting in Canada.

Regarding diagnosis, we should celebrate the progress that has been made advancing earlier diagnosis in recent years. The survey revealed:

  • 71% of children received a Dravet syndrome (DS) diagnosis before their first birthday with an average time of 7 months from symptom onset to diagnosis.

  • Every caregiver who participated in the survey reported a supporting genetic test result.

However, there remains room for improvement to shorten the time from symptom onset to diagnosis, as 29% of children received their DS diagnosis between 13 to 34 months of age, considerably later than the onset of seizures. Recognizing this delay, the ‘International consensus on the diagnosis and management of Dravet syndrome’ underscores that "expedient diagnosis is critical to avoid contraindicated therapies that may exacerbate seizures and negatively impact development." Ultimately, “an accurate diagnosis can be beneficial at any age, not only guiding treatment choices but also connecting families to networks of support.”


Upon receiving a DS diagnosis, some caregivers often feel overwhelmed, and others found the information helpful/empowering. A primary challenge expressed by caregivers was finding the right healthcare team. Surprisingly, 71% of newly diagnosed families managing Dravet syndrome changed epilepsy doctors within the first four years due to a lack of clinical expertise (51%) and/or trust issues (20%), such as "insufficient follow-up care," and "poor rapport."

The survey also revealed evolving needs among caregivers in learning about the emergence of non-seizure symptoms like intellectual disability, behavioral issues, and sleep disorders, along with a growing demand for greater family support.

After receiving a DS diagnosis, caregivers typically turn to online resources (82%), trusted patient advocacy organizations (81%), support groups (68%), and healthcare providers (64%) for information.

Patient groups like the Dravet Syndrome Foundation play a pivotal role as an extension of the medical community, providing easily understandable resources and fostering supportive communities that significantly enhance the lives of those affected by this condition. Healthcare providers should continue to refer and strongly encourage caregivers to connect with groups like the Dravet Syndrome Foundation to enhance their understanding of the diagnosis and improve family well-being. Together we have the power to make a difference in the lives of individuals and families living through their diagnosis and care journey.

About the survey:

The survey was distributed via the Dravet Syndrome Foundation International Family Network to caregivers of children ≤4 years of age diagnosed with DS. The survey included 27 multiple-choice questions and 9 open-text response questions. The survey was distributed to 352 caregivers in total; 73 (20.7%) responded.

To receive a copy of the poster email: UCBCares@ucb.com.

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