BEGIN:VCALENDAR VERSION:2.0 PRODID:-//USHER Italia A.P.S. - ECPv6.17.1//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-ORIGINAL-URL:https://usheritalia.it/en/ X-WR-CALDESC:Events for USHER Italia A.P.S. REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:UTC BEGIN:STANDARD TZOFFSETFROM:+0000 TZOFFSETTO:+0000 TZNAME:UTC DTSTART:20240101T000000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=UTC:20260721T103000 DTEND;TZID=UTC:20260721T143000 DTSTAMP:20260714T113125Z CREATED:20260714T091724Z LAST-MODIFIED:20260714T113125Z UID:3773-1784629800-1784644200@usheritalia.it SUMMARY:Nuovo Nomenclatore Regionale - Regione Lazio DESCRIPTION:testo descrittivo \n  \n  \n  URL:https://usheritalia.it/en/event/nuovo-nomenclatore-regionale-regione-lazio/ LOCATION:Roma\, Via Cristoforo Colombo n. 212 ATTACH;FMTTYPE=image/png:https://usheritalia.it/wp-content/uploads/2026/07/copertina-event.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260520 DTEND;VALUE=DATE:20260521 DTSTAMP:20260528T152656Z CREATED:20260520T123857Z LAST-MODIFIED:20260528T152656Z UID:3676-1779235200-1779321599@usheritalia.it SUMMARY:Rethinking Accessibility: Deaf People and Cultural Heritage: Experiences\, Perspectives\, and Critical Issues DESCRIPTION:Rome – Palazzo Merulana\nAt the conference “Rethinking Accessibility: Deaf People and Cultural Heritage: Experiences\, Perspectives\, and Critical Issues“\, organized by ENS\, the key concept was co-design. \nIndeed\, it was emphasized that deaf people not only benefit from museum services\, but can also “produce” those services. Just as a trained and competent hearing person manages museum services\, a trained and competent deaf person can also manage those services. \nIndeed\, by designing a museum service for a deaf audience\, the deaf person is able to directly offer the most suitable offering to the deaf public. Through the co-design of the museum’s offerings by trained and competent hearing and deaf visitors\, we can create an offering for all\, engaging everyone in the shared enjoyment of the works on display. \nAt Palazzo Merulana\, this co-design was realized with “Imaginaria\,” a collection of immaterial art: thanks to an app\, some of the exhibited works are brought to life through a digital art installation\, where pictorial language is accompanied by poetic verbal commentary on the work and the performance of a signing actress. \nCo-design also took place at the Galleria Borghese with the project “Stories of Cardinal Scipione and the Borghese House\,” the result of the work of a group of five people\, three of whom are deaf (one guide\, two performers). Once a month\, following a different itinerary\, the tours are conducted with two guides\, one hearing and one deaf\, in both Italian and LIS\, for both hearing and deaf audiences. Furthermore\, the “Live Masterpieces” project was launched in January 2025\, with tours conducted with two guides\, one hearing and one deaf\, in both Italian and LIS\, but also featuring performances in Visual Vernacular (VV)\, a performance form that uses visual techniques\, facial expressions\, and body movement to construct iconic narratives. “Imaginaria\,” “Stories of Cardinal Scipione and the Borghese House\,” and “Masterpieces Live” are proof not only of the possibility but\, above all\, of the quality of the synergistic work of hearing and deaf people. \nThe images published in this section are the property of Galleria Borghese and are used exclusively for informational and documentary purposes related to the activities carried out. \n\n \n \n \n \n Guided tours to bring hearing and deaf visitors together\n \n \n \n \n \n Performer in Visual Vernacular (VV)\n \n \n \n \n \n PERMANENT “IMAGINARIAN” EXHIBITION URL:https://usheritalia.it/en/event/convegno-ripensare-laccessibilita-persone-sorde-e-patrimonio-culturale-tra-esperienze-prospettive-e-criticita/ LOCATION:ROMA\, Palazzo Merulana ATTACH;FMTTYPE=image/webp:https://usheritalia.it/wp-content/uploads/2026/05/Palazzo-Merulana-3-e1779712805677.webp END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260303 DTEND;VALUE=DATE:20260304 DTSTAMP:20260319T142445Z CREATED:20260303T110519Z LAST-MODIFIED:20260319T142445Z UID:3065-1772496000-1772582399@usheritalia.it SUMMARY:National symposium: “Hearing Loss\, Deafness\, and Innovation: The Contribution of Science\, Institutions\, and the Third Sector" DESCRIPTION:“Hearing Loss\, Deafness\, and Innovation: The Contribution of Science\, Institutions\, and the Third Sector” was held on March 3\, 2026\, in Rome’s Sala della Regina (Queen’s Hall) of the Chamber of Deputies. The Symposium was promoted to mark the fifth National Awareness Day on Ear Diseases and Consequent Hearing Disorders\, coinciding with World Hearing Day (WHO). \nThe Symposium was organized by the Italian Society of Otorhinolaryngology and Head and Neck Surgery (SIOeChCF)\, the Italian Society of Audiology and Phoniatrics (SIAF) and the National Association of the Deaf (ANS). Representatives of the Institutions\, the Scientific Community\, and patient Associations all agreed on the need for early diagnosis of hearing loss and deafness\, early rehabilitation\, and lifelong care. They emphasized that access to care and rehabilitation varies greatly from place to place in Italy. \nInstitutional representatives discussed the project to establish a National Observatory on Deafness\, with the aim of initiating legislative processes leading to the adoption of legal provisions that effectively protect hearing health. But can the Legislator alone achieve this goal? The unanimous answer was “Negative!” Only through stable and permanent collaboration between the Legislator\, the Scientific Community and Associations representing people with hearing loss and deafness can legal provisions emerge that effectively protect hearing health\, since only those who “live” with hearing loss and deafness can adequately represent their needs and possible solutions. \nLawyer Laura Orsatti\, President of USHER Italia A.P.S.\, spoke about the Association and its goals\, as well as the enormous challenges\, including serious psychological ones\, faced by people with Usher Syndrome: the difficulties caused by low vision and blindness\, as well as those caused by hearing loss and deafness. In closing\, the President warmly invited everyone present at the Symposium to collaborate with USHER Italia A.P.S. in promoting awareness of Usher Syndrome\, thus reaching out to the public and ensuring diagnoses and a significant boost for scientific research. \n  \n\n \n \n \n \n President of USHER Italia A.P.S.\n \n \n \n \n \n Sala della Regina URL:https://usheritalia.it/en/event/simposio-nazionale-ipoacusia-sordita-e-innovazione-il-contributo-della-scienza-delle-istituzioni-e-del-terzo-settore/ LOCATION:Sala della Regina – Camera dei Deputati\, Roma ATTACH;FMTTYPE=image/jpeg:https://usheritalia.it/wp-content/uploads/2026/03/Palazzo-Montecitorio.jpg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20251203 DTEND;VALUE=DATE:20251204 DTSTAMP:20260120T112400Z CREATED:20251203T151949Z LAST-MODIFIED:20260120T112400Z UID:2962-1764720000-1764806399@usheritalia.it SUMMARY:Workshop Outcome Meausures for Gene Therapy DESCRIPTION:The “Workshop Outcome Measures for Gene Therapy” event\, held on December 3\, 2025\, at the Bambino Gesù Children’s Hospital in Rome\, brought together international clinicians and researchers to discuss the state of the art of gene therapies for inherited retinal diseases and the best metrics for assessing their efficacy. \nUSHER Italia A.P.S. was invited to participate as a representative of those interested in gene therapies for retinal diseases\, particularly retinitis pigmentosa. \nIn the introductory session\, M. Raponi and L. Buzzonetti opened the proceedings with “Introductory remarks on rare eye diseases\,” outlining the clinical and epidemiological burden of rare eye diseases and the need for dedicated pathways. \nRizzo and H. Dolfuss then presented “New therapeutic approaches in IRDs and the role of ERN EYE\,” presenting the development of gene therapies and the role of European reference networks in coordinating research and access to treatments. \nIn the first part of the morning session\, coordinated by G. Iarossi and Prof. H. Dolfuss\, two general topics were discussed: “Gene therapy in some specific IRDs: where are we now?” and “Analysis of IRD clinical trial experience: what was missing?”\, with a critical analysis of the trial results and the gaps in the outcomes used so far. \nA.P. Salvetti presented a presentation on “Diagnostic approaches and endpoints for IRD clinical trials\,” examining retinal imaging\, functional measures\, and outcome criteria currently used or proposed for future studies. \nThe following topics were then discussed: \n– an update on therapies for RPGR\, illustrating clinical experiences and the critical issues in choosing the most sensitive functional endpoints (A.P. Salvetti)\, \n– “X-linked Retinoschisis\,” focusing on the preliminary results of gene therapy trials and the challenges of study design in a disease with a variable phenotype (P. Sieving)\, \n– “RPE65/USH1B\,” reporting on experience with already approved therapies and efficacy and safety data collected in registries and long-term follow-ups (F. Testa)\, \n– “CEP290/USH2A“\, analyzing gene editing and antisense approaches and the prospects for forms of the disease currently without an approved treatment (B. Leroy)\, \n– “RP11“\, describing the experimental strategies and structural and functional endpoints considered in the protocols under development (J. Prener Holtan)\, \n– “Gene agnostic approaches\,” i.e.\, strategies not linked to a single gene (e.g.\, neuroprotective or optogenetic therapies) and the related difficulties in defining shared outcomes (I. Audo). \n  \nThe afternoon session was chaired by B. Falsini and G. Iarossi. \nThe focus shifted to “Clinical vision testing (electrophysiology\, psychophysics\, multimodal imaging): how to select the most appropriate parameters to evaluate therapy efficacy\,” with a discussion guided by the available evidence in the literature on structural and functional outcomes in ocular gene therapy trials. \nSieving\, B. Falsini\, and G. Iarossi explored the role of “electrophysiology\,” illustrating how ERG\, evoked potentials\, and other techniques can quantify improvements even in the presence of minimal anatomical changes. \nAmato and R. Mastromartino discussed “Psychophysics\,” highlighting the usefulness of tests such as light sensitivity thresholds\, campimetry\, and contrast measurements to detect clinically significant changes from the patient’s perspective. \nA.P. Salvetti\, A. Coppè\, and G. Gambini presented “Multimodal imaging\,” demonstrating how OCT\, autofluorescence\, and other combined imaging techniques can correlate structural changes with functional changes in trials. \nDolfuss presented the “ERN EYE act4red initiative\,” a European project aimed at standardizing diagnostic and monitoring pathways in IRDs and defining shared outcomes for multicenter studies. \nBorgonovi presented “Patient and regulatory agency perspectives\,” addressing the patient perspective\, expectations regarding clinical benefits\, and regulatory and health technology assessment aspects related to the evaluation of gene therapies. \n  \nThe final presentation was delivered by our President\, Attorney Laura Orsatti\, assisted by Vice President\, Attorney Sergio Massimiliano Bologna\, and Associate Dr. Anna Balletta. \nUSHER Italia A.P.S. contributed to the final presentation by bringing the voice of people with Usher Syndrome to the public’s attention\, illustrating the Association’s activities\, advocacy goals\, and research priorities in line with the needs expressed by its members\, and highlighting the priority of establishing a network of connections with institutional bodies and those involved in research into potential therapies based on the most recent recommendations on outcomes in ocular gene therapy trials. \nPresident Laura Orsatti concluded by expressing her hope that people with Usher Syndrome\, now experiencing hearing loss and currently receiving treatment as such\, and now experiencing vision loss and currently receiving treatment as such\, will be treated jointly by doctors specializing in ENT and ophthalmology in every healthcare center they visit\, as only this approach can ensure effective and comprehensive care for those with Usher Syndrome. \nRead the article by Dr. Giancarlo Iarossi: The importance of understanding the natural history of Usher Syndrome \nCheck the event program: WORKSHOP OUTCOME MEASURES FOR GENE THERAPY \n  \n\n \n \n \n \n Workshop poster \n \n \n \n \n \n USHER Italia A.P.S. introduction URL:https://usheritalia.it/en/event/workshop-outcome-meausures-for-gene-therapy/ LOCATION:Roma\, P.zza S. Onofrio n. 4 ATTACH;FMTTYPE=image/jpeg:https://usheritalia.it/wp-content/uploads/2025/06/Presidente.jpg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20250619 DTEND;VALUE=DATE:20250622 DTSTAMP:20260113T152636Z CREATED:20250619T093045Z LAST-MODIFIED:20260113T152636Z UID:2825-1750291200-1750550399@usheritalia.it SUMMARY:SIMPOSIO INTERNAZIONALE STICHTING USHER SYNDROOM DESCRIPTION: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. \nOn 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. \nThe 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 “retinitis pigmentosa.” 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. \nAmong 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 “Luigi Vanvitelli” in Naples. The scientist shared interesting and encouraging updates on the ongoing regenerative gene therapy clinical trial on Usher type 1-b patients. \nThere was a strong participation of scholars and people with Usher Syndrome from the USA. We established connections and exchanged communications with many of them. \nThe 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. \nThroughout the event\, International Sign Language interpreters were present\, allowing full understanding and sharing of every piece of information by all. \nThe 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. \nIn 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! \nWe 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. \nIndeed\, 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. \nOtherwise\, Usher people risk isolating themselves\, closing off in their home and family\, giving up on living in the world. \nA 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. \nA few weeks earlier\, the Commission had informed us that our preclinical and clinical therapy project\, presented together with our Scientific Committee and the “Bambino Gesù” Pediatric Hospital in Rome\, although considered very interesting\, had not won the prize. \nThe award went to the trial by Dr. Prof. Marko Hawlina (one of the world’s leading experts\, who practices both in Ljubljana\, Slovenia\, and Trieste\, Italy) for gene therapy targeting Usher type 2-a: the “mini gene strategy.” \nWe thus met Dr. Prof. Hawlina and parted with the promise to meet again soon and start collaborative relations\, given the proximity and shared goals. \nAnother 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. \nWe 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. \nAnd now our flyers and business cards are traveling around the world\, while international relations are growing. \nTo learn more and read summaries of the presentations\, click on the following link: https://www.ush2025.org/en/terugblik/ \n\n \n \n \n \n Sergio M. Bologna per USHER Italia A.P.S.\n \n \n \n \n \n Sergio M. Bologna e Famiglia Adell\n \n \n \n \n \n Sergio M. Bologna e Dr Marko Hawlina\n \n \n \n \n \n Sergio M. Bologna e Dominique Sturz\n \n \n\n  URL:https://usheritalia.it/en/event/simposio-internazionale-stichting-usher-syndroom/ LOCATION:Nijmegen\, Belgium CATEGORIES:Categoria esempio ATTACH;FMTTYPE=image/png:https://usheritalia.it/wp-content/uploads/2025/05/event-simposio.png END:VEVENT END:VCALENDAR