Rébecca Hubert
Bio
Rébecca Hubert is a French parent advocate and vice secretary of Alliance Syndrome de Dravet, the national patient organisation for Dravet syndrome in France. She lives near Paris with her husband and four children, including her youngest son, Gian, who has Dravet syndrome.
Before becoming a full-time carer, Rébecca worked as a tour manager. She now focuses on supporting her family while contributing actively to patient advocacy, peer support, and research engagement within the Dravet community.
Lived experience & advocacy
As a parent of a child with Dravet syndrome, Rébecca brings deep lived experience of the medical, emotional, and practical realities of developmental and epileptic encephalopathies. She speaks openly about the constant supervision required, the impact on siblings, family dynamics, and the balance between seizure control and quality of life.
Through her role at Alliance Syndrome de Dravet, she regularly supports newly diagnosed families, helps coordinate peer connections, and contributes to projects aimed at improving professional understanding of family life with Dravet syndrome.
Areas of focus
Dravet syndrome
Family life & caregiving
Patient and caregiver advocacy
Quality of life in developmental epileptic encephalopathies
Peer support for newly diagnosed families
Research participation and lived-experience insight
Affiliation
Alliance Syndrome de Dravet (France) – Vice Secretary
Episode
What Life Is Really Like for Families Affected by Dravet Syndrome - 18 Dec 2025
Access this episode however you prefer:
🎧 Podcast | 🎬 Video | 📄 Transcript