A Comet Lands at Your Doorstep:
Dravet Syndrome, improving
care and daily life for
children and families

This project aimed to deepen understanding of the healthcare journey and everyday life experience of pediatric patients with Dravet syndrome and their families. Its core ambition: to generate actionable, patient-designed solutions to real-life challenges, and to give visibility and voice to families navigating a rare and complex condition.

Through an in-depth ethnographic approach, this project explores the care pathways and day-to-day life experiences of children living with Dravet syndrome and their caregivers. By immersing ourselves in their real environments, we aim to identify key emotional, structural, and logistical barriers that families face throughout their medical and personal journeys. Rather than relying on assumptions, we gather creative ideas directly from patients and caregivers, empowering them to co-design meaningful responses to the most pressing pain points. From this collective ideation emerge 2 to 3 concrete, patient-driven solutions selected for further development and real-world experimentation. Ultimately, this initiative strengthens UCB’s position as a trusted, empathetic, and forward-thinking partner in the field of rare epilepsy care, deeply committed to supporting families with innovative, co-created solutions grounded in real-life needs.

With anan ethnographer, we conducted home-based, semi-structured interviews and co-creation sessions with 5 families (children aged 7 to 15) across diverse French regions and household structures. Each 2.5-hour session included:

Ethnographic Interview (1.5h): Exploring disease impact, care milestones, and emotional experiences using creative facilitation tools (photo-language, emotion wheels, care timelines, idea cards, etc.).

Ideation Workshop (1h): Prioritizing challenges and co-designing up to three tailored solutions per family.

The project’s deliverables included a full suite of tailored research and design outputs. Custom tools were developed specifically for mapping patient experiences and facilitating ideation workshops, each supported by one of two bespoke visual identities co-created and validated in collaboration with the client. A detailed ethnographic report was produced, featuring an in-depth patient journey map and a visually rendered emotional curve that captured the evolving psychological impact of life with Dravet syndrome. To ensure wider visibility and knowledge-sharing, a clear and engaging infographic was designed to communicate key study findings to both medical and non-medical audiences. In total, 26 fully developed solution cards were created, each one thoughtfully visualized and grounded in patient experience. From these, three were selected for further development, including the allocation of dedicated budgets for future implementation.

Among the project’s key insights was the emergence of a highly detailed and emotionally resonant mapping of both individual and collective care journeys. The in-situ research method allowed for the collection of powerful, first-hand narratives that highlighted real-world constraints and resilience strategies used by families. From this work emerged a series of creative and actionable solutions rooted in lived expertise. A central symbol of the initiative, the “Comet Suitcase,” traveled from family to family, collecting emotional insights, co-designed materials, and tools for empowerment, becoming a metaphor for shared knowledge and mobility within the Dravet community. The project also generated increased visibility for participating patient associations (Dravengers) and built meaningful bridges with the broader medical ecosystem.

Ultimately, this initiative showcases how design driven by empathy, when grounded in rigorous ethnographic research, can deeply enhance care experiences for patients with complex and rare conditions like Dravet syndrome. It reinforces the value of co-designing solutions with patients and families, not merely for them, and demonstrates that healthcare innovation can, and should, be built from real-life needs and collaborative creativity.