The Dravet Syndrome Foundation of Spain hosted its 2026 Annual Family Meeting on March 20 at the Rafaela Ybarra School in Madrid, bringing together roughly 100 family members, researchers, and specialists.
Key Highlights:
- Scientific Progress: Updates on the Foundation’s own laboratory in Elche and promising new clinical trials focusing on gene-targeted therapies.
- Holistic Care: Sessions addressed “invisible” needs, such as the emotional well-being of siblings and managing the transition into adolescence and adulthood.
- Advocacy & Legal: The Foundation reported on recent legislative demands in Navarre (e.g., universal access to orthopedic devices) and provided guidance on financial planning for dependents.
- Recognition: The 2026 Dravet Awards honored Dr. Antonio Gil-Nagel, the host school, and the Mateos Bragado family for their contributions to the cause.
More details below:
Families and Researchers Unite in Madrid for the 2026 Dravet Syndrome Annual Meeting
MADRID, March 23, 2026 — This past weekend, the Rafaela Ybarra School hosted the Annual Family Meeting organized by the Dravet Syndrome Foundation. The event brought together approximately 100 participants, providing a vital space for families to connect, share personal journeys, and engage with the latest breakthroughs in rare disease research.
The meeting highlighted the Foundation’s unique role as a bridge between patient families, the pharmaceutical industry, and the scientific community. Volunteers from the school supported the day’s logistics, fostering a community-driven atmosphere.
Advancements in Science and Advocacy
José Ángel Aibar, President of the Dravet Syndrome Foundation, opened the event by reflecting on the success of the European Dravet Syndrome Conference held earlier that week. He emphasized several major milestones, including:
- The Elche Laboratory: The first-ever lab owned and operated by a patient organization.
- Legislative Gains: Recent proposals to the Parliament of Navarre seeking automatic disability recognition, dedicated case managers, and free access to orthopedic supports.
From the Laboratory to the Clinic
Scientific Director Simona Giorgi and Dr. Aroa Arboleya provided updates on the “therapeutic arsenal” currently in development. They noted that research into symptomatic drugs and new molecules is moving at an unprecedented pace. Notably, Dr. Ángel Aledo discussed clinical trials for advanced therapies, which aim to go beyond seizure reduction to improve overall cognitive development and communication.
Comprehensive Support for the “Whole Family”
The conference moved beyond medicine to address the daily realities of living with Dravet Syndrome:
- Sibling Support: Dr. Esther Moraleda highlighted the often-overlooked emotional needs of siblings, reminding attendees that “caring for siblings is caring for the entire family.”
- Adolescence and Adulthood: Experts provided strategies for navigating the behavioral shifts of the teenage years and the complexities of adult care.
- Financial Planning: Legal expert Jesús A. Moure offered clarity on protecting the financial future of individuals with disabilities through specialized pension plans and asset management.
The 2026 Dravet Awards
To conclude the event, the Foundation presented its annual awards to:
- Dr. Antonio Gil-Nagel, for his career-long scientific and humanitarian commitment.
- The Rafaela Ybarra School, for their unwavering hospitality and support.
- The Mateos Bragado Family, for their inspiring examples of solidarity.
The Foundation has already announced that the community will reconvene for the next Annual Family Meeting on March 13, 2027.
