From June 19–21, 2025, researchers, clinicians, and members of the Usher syndrome community gathered in Nijmegen, the Netherlands, for USH2025, the most recent International Symposium on Usher Syndrome since 2018. The event, co-organized by the Stichting Ushersyndroom, the Usher Syndrome Coalition, and research partners from Radboudumc, Boston Children’s Hospital, and LSU Health, brought together over 300 people from across the world for three days of science, collaboration, and connection.
Sharing Science and Lived Experience
USH2025 opened with powerful keynote talks and a moving tribute to Prof. Dr. William Kimberling. Over the next two days, more than 30 scientists shared their latest work through presentations, poster sessions, and keynote lectures. Research topics ranged from early genetic diagnosis and new prevalence data to gene and RNA therapies, organoid and animal models, and optogenetics for vision restoration.
A central theme of the conference was collaboration - not only among scientists, but also with those living with Usher syndrome and related advocates. Talks like “From Personal Experience to Scientific Research” highlighted how the voices of people living with Usher syndrome are shaping research priorities, such as better understanding fatigue and sleep challenges in USH2A.
Advancing Toward Treatment
USH2025 showcased the real progress being made toward therapies. Researchers shared updates on multiple gene therapy approaches, including:
- Dual and mini-gene delivery for USH1B and USH1F
- AAV-mediated and non-viral exon skipping for USH2A and ADGRV1
- RNA therapies and targeted editing strategies
- Optogenetics to restore vision using light-sensitive proteins
While challenges remain, the message was clear: treatments for Usher syndrome are no longer a distant goal - they’re becoming a reality.
A Community-Focused “Congrestival”
On Saturday, June 21, the focus shifted to the community. The “Congrestival” brought families, advocates, and scientists together for a more informal program with accessible scientific updates, workshops, art installations, and a full “Meet the Scientist” track. Sessions were offered in multiple languages and communication modalities, including spoken language, captioning, and sign languages.
This inclusive, community-first atmosphere underscored one of the biggest takeaways from USH2025: progress in Usher science depends on partnerships with the real experts on Usher syndrome - those living with this rare condition.
Check out our Current USH Research page specific to USH subtype as well as other gene-independent therapeutic approaches.
