Retina International warmly congratulates Professor Hélène Dollfus on receiving the 2026 EURORDIS Black Pearl Scientific Award, recognising her outstanding contributions to research in rare genetic eye diseases and her long-standing commitment to the rare disease community.
Professor Dollfus has been Head of the Medical Genetics Department at Strasbourg University Hospital since 2002 and Coordinator of the Rare Diseases in Ophthalmological Genetics Reference Centre (CARGO) since 2004. She also plays a key leadership role within the French Rare Sensory Diseases Network (SENSGENE) and the European Reference Network for Rare Eye Diseases (ERN-EYE), fostering collaboration among clinicians and researchers across Europe.
Her research has been instrumental in identifying genes linked to rare conditions such as Bardet-Biedl syndrome and other ciliopathies, helping to advance understanding of disease mechanisms and support the development of targeted therapies.
Beyond her scientific achievements, Professor Dollfus is deeply committed to patient engagement and advocacy, working closely with organisations including Retina International and Retina France, supporting patient registries, clinical care, and public awareness initiatives such as Rare Disease Day.
The EURORDIS Scientific Award honours researchers whose careers combine scientific excellence with meaningful support for the patient community. Professor Dollfus’ work exemplifies these values and reflects a lifelong dedication to improving the lives of people living with rare diseases.
At Retina International, we are deeply grateful for Professor Dollfus’ long-standing collaboration, leadership, and unwavering commitment to the retinal disease community. We warmly congratulate her on this well-deserved recognition and thank her for her continued dedication to improving the lives of people and families affected by rare eye diseases.
