{"id":2825,"date":"2025-06-19T09:30:45","date_gmt":"2025-06-19T09:30:45","guid":{"rendered":"https:\/\/usheritalia.it\/event\/simposio-internazionale-stichting-usher-syndroom\/"},"modified":"2026-01-13T15:26:36","modified_gmt":"2026-01-13T15:26:36","slug":"simposio-internazionale-stichting-usher-syndroom","status":"publish","type":"tribe_events","link":"https:\/\/usheritalia.it\/en\/event\/simposio-internazionale-stichting-usher-syndroom\/","title":{"rendered":"SIMPOSIO INTERNAZIONALE STICHTING USHER SYNDROOM"},"content":{"rendered":"

The first official outing of USHER Italia A.P.S. took place in an international context, namely the INTERNATIONAL SYMPOSIUM OF THE USHER SYNDROME FOUNDATION, held from June 19 to 21, 2025, in Nijmegen (Netherlands).
\nAn international symposium of this caliber had been awaited for seven years, and after attending, we can confirm that it lived up to expectations.
\nUSHER Italia A.P.S. was the only Italian association representing people with Usher Syndrome to participate in the event.<\/p>\n

On June 19 and 20, dozens of presentations were given by scientists from all over the world, who shared the results of their studies and upcoming projects on various topics, summarized as follows:
\nA. Genetics and diagnosis of Usher syndrome;
\nB. Modeling of Usher syndrome in vitro and in vivo;
\nC. Molecular mechanisms of the pathogenesis of Usher syndrome;
\nD. Therapeutic strategies for Usher syndrome;
\nE. Clinical developments: beyond the state of the art in phenotyping, biomarkers, and clinical endpoints.<\/p>\n

The most important topic, both in terms of number of presentations and information provided, was the deepening of knowledge and various therapeutic approaches, particularly gene therapy for the treatment of \u201cretinitis pigmentosa.\u201d Meanwhile, the status of trials on innovative therapies for hearing loss does not yet allow significant results to be appreciated, and cochlear implants remain the established and functional solution to date.<\/p>\n

Among the most anticipated and relevant presentations was the only one given by an Italian scientist, Dr. Prof. Francesco Testa from the Ophthalmology Clinic of the University of \u201cLuigi Vanvitelli\u201d in Naples. The scientist shared interesting and encouraging updates on the ongoing regenerative gene therapy clinical trial on Usher type 1-b patients.<\/p>\n

There was a strong participation of scholars and people with Usher Syndrome from the USA. We established connections and exchanged communications with many of them.<\/p>\n

The hosts and event organizers were fantastic: always present, proactive, collaborative, and enthusiastic, they welcomed us with friendship and interest. We hope to carry out projects together, both because they are highly active scientific experts and because they represent a community open to dialogue with people from other countries.<\/p>\n

Throughout the event, International Sign Language interpreters were present, allowing full understanding and sharing of every piece of information by all.<\/p>\n

The Congrestival, called the Festival of the Senses, took place on June 21, 2025, and was an exceptional and highly successful event: a gathering of the international Usher community that transmitted great enthusiasm to everyone.<\/p>\n

In particular, the open discussion and the many questions and answers among people and families of all ages and from various social and geographical backgrounds was a unique enrichment, as we spent hours talking together in a large room with hundreds of participants!<\/p>\n

We all came away convinced that, despite severe and evident sensory limitations, people with Usher Syndrome can socialize thanks to a great capacity for adaptation, living every moment of life with satisfaction.<\/p>\n

Indeed, people with Usher Syndrome, when sharing their experiences, highlighted that they know how to live a full life, explaining that the fundamental condition is the willingness to truly open up and engage with everyone, having the intent to communicate to the interlocutor any lack of understanding of their words, the need for help, and also the way to overcome the obstacle that hinders the relationship.<\/p>\n

Otherwise, Usher people risk isolating themselves, closing off in their home and family, giving up on living in the world.<\/p>\n

A very important moment of the Congrestival was the announcement of the winner of the Usher Crusher Grant, awarded for the best project receiving a non-repayable grant of 300,000 Euros.<\/p>\n

A few weeks earlier, the Commission had informed us that our preclinical and clinical therapy project, presented together with our Scientific Committee and the \u201cBambino Ges\u00f9\u201d Pediatric Hospital in Rome, although considered very interesting, had not won the prize.<\/p>\n

The award went to the trial by Dr. Prof. Marko Hawlina (one of the world\u2019s leading experts, who practices both in Ljubljana, Slovenia, and Trieste, Italy) for gene therapy targeting Usher type 2-a: the \u201cmini gene strategy.\u201d<\/p>\n

We thus met Dr. Prof. Hawlina and parted with the promise to meet again soon and start collaborative relations, given the proximity and shared goals.<\/p>\n

Another fundamental relationship for achieving our objectives is the one established with Mag. Dominique Sturz, Patient Advocate and founder of Usher Initiative Austria, one of the most authoritative and representative members of the ERN in Europe, ambassador of the Usher Coalition, well-known in the Usher community not only in Europe, and active for over 15 years in the associative field. With her, we have already started some projects to strengthen the associative initiative in Europe.<\/p>\n

We can conclude by stating that we participated in an event that was important not only from an informational point of view but, above all, from a relational perspective, as it allowed us to meet participants of an international network that will enable us to share ideas, experiences, and projects for the immediate future.<\/p>\n

And now our flyers and business cards are traveling around the world, while international relations are growing.<\/p>\n

To learn more and read summaries of the presentations, click on the following link: https:\/\/www.ush2025.org\/en\/terugblik\/<\/a><\/p>\n