On the last weekend of June 2026 the PURA Conference was held in Munich. During the conference, we were reminded what makes rare disease research so special: bringing together families, clinicians, and researchers from around the world, united by a common goal. Meeting the families and children living with PURA syndrome was a powerful reminder of why we do this work. Their resilience, optimism, and trust inspire us to keep pushing our research forward.
We are grateful that our research team was recognized with the PURA Hero Award 2026. Thank you to everyone who made this weekend so special.