{"id":2540,"date":"2025-09-01T10:44:35","date_gmt":"2025-09-01T10:44:35","guid":{"rendered":"https:\/\/usheritalia.it\/dominique-sturz\/"},"modified":"2026-04-21T15:52:59","modified_gmt":"2026-04-21T15:52:59","slug":"dominique-sturz","status":"publish","type":"post","link":"https:\/\/usheritalia.it\/en\/dominique-sturz\/","title":{"rendered":"Dominique Sturz"},"content":{"rendered":"\n

L:<\/strong> Thank you Dominique for this meeting. As President of USHER Italia A.P.S., I wanted to meet you having learned that you\u2019ve been involved in the field of Usher Syndrome for some time. 
When did your commitment begin?<\/p>\n\n\n\n

D:<\/strong> My journey as a Patient Advocate started in the late 1990s (after my daughter had been diagnosed deaf at age one in 1997) as consequence of our positive experiences with early bilateral cochlear implantation and audioverbal hearing and speech development. She received her 1st<\/sup> implant at 18 months, and we could very quickly experience the limitations of just one implant, so she received the 2nd<\/sup> one at under 3 years and has made a big difference in speech perception in noisy environments, localisation and for her vestibular function. She has always been a happy and successful CI user and a role model, and we have become ambassadors for early bilateral Cochlear implantation at the Cochlea Implantat Austria, for standardised Newborn Hearing Screening and for early diagnosis and early intervention. I also used to be an Austrian delegate at the European Cochlear Users Association Euro-CIU.<\/p>\n\n\n\n

After an additional clinical diagnosis of RP and a presumed diagnosis of Usher Syndrome at age 9 in 2005, I started to connect with relevant Usher- and Retina patient organisations and leading research institutions and researchers, scientists and clinicians in Europe and the US and have acquired expert knowledge which I am delighted to contribute in my role as a Patient Advocate to various institutions in the hearing space as well as in the Usher-, the Retina-,  Rare Eye Disease and the wider Rare Disease space, building powerful partnerships and shaping Rare Disease policies in my country and at international level.<\/p>\n\n\n\n

My daughter\u2019s diagnosis of USH1b was genetically confirmed only at age 16 in 2012, therefore I\u2019ve worked on implementing early genetic diagnosis of Usher Syndrome <\/strong>with the support of the Austrian ORL society, right after detection of a hearing disorder by Newborn Hearing Screening, and on an interdisciplinary approach ENT\/Genetics\/Ophthalmology.<\/p>\n\n\n\n

L:<\/strong> Which organizations are you part of, and what are your roles and responsibilities?<\/p>\n\n\n\n

D:<\/strong> I started a family group (today\u2019s Usher Initiative Austria) in 2014, founded a group together with adults living with deaf blindness (Forum Usher Deafblind Austria) in 2016, but turned back to \u201cmy\u201d family group very soon, because young families suspecting or receiving a diagnosis have always been so close to my heart. I want to be there for them during the most difficult time of their lives and provide peer support. Fortunately some of the younger families are slowly taking over some of the peer support J<\/p>\n\n\n\n

Usher Inititative Austria<\/strong> informs and empowers Usher families, connects them with leading national and international experts, advocates for better care and and early genetic diagnosis through an interdisciplinary approach Eye\/ENT\/Genetics, delivers reliable and up to date information about the latest interntional science & research and supports & informs research. Since Usher sysndrome is a rare disease, invisible, with no cure and a severe impact on peoples\u2019 lifes, reliable information for Usher families and empathic couselling are crucial, also their empowerement, since they have to be strong and resilient to build an adequate environment for their affected children and support them in thriving \u2013 despite Usher syndrome. One of the biggest challenges is clearly to support, finance, inform, enhance and foster research of inherited retinal diseases such as Usher syndrome aiming to restore vision and\/or, at least, to halt the progression of vision loss. One of the biggest achievemetns is clearly, that today we have a few retinal experts in my country connected to the international leading clincians and expert centers and are members\/affiliated partners of ERN Eye (see below).<\/p>\n\n\n\n

I had realised very soon, that there has always been a strong movement in the Rare Disease Community, where they always need committed people like me, and it absolutel made sense tio join forces, so I joined the Austrian Rare Disease Alliance<\/strong> in 2016, became their deputy secretary general in 2017 and their Vice-President in 2020 (till June 2025). Also as a member of some taskforces of the European Rare Disease Organisation EURORDIS<\/strong>, I have contributed to shaping rare disease policies at EU and national level.<\/p>\n\n\n\n

In 2018, I joined the European Patient Advocacy Group of ERN Eye<\/strong> and became their Chair two years later. ERNs were launched in 2017 as an EU institution to deliver better diagnosis, treatment and care for people living with Rare Diseases. Since it is all about patients, the so-called ePAGs are involved in all their activities as patient representatives and included in all projects and the ePAG chairs are also included in ERN governance. This is also very close to my heart, I see ERNs as a game changer in the delivery of timely diagnosis, treatments and care for Rare Diseases such as Usher syndrome.<\/p>\n\n\n\n

When you go to their website, you have access to their ressources, for uhser syndrome, you will find some for Usher Syndrome, eg ERN Eye Good practices series leaflet for professionals, ERN Eye Educational video on USH, eLearning program on paediatric ophthalmology to be launched this year and many more.<\/p>\n\n\n\n

L:<\/strong> What are the goals of each of these organizations
What goals have been achieved?
What are the plans for the goals not yet achieved?<\/p>\n\n\n\n

D:<\/strong> My dream has always been, that children with Usher syndrome have equal opportunities and can lead happy, healthy and fullfilling lifes, just like their peers. That research of disease mechanisms and innovative treatment in rare diseases are given priority vis a vis common diseases. That specialists, health care professionals also beyond medical university centers understand the key role of genetic testing as a confirmed, accurate diagnosis relevant for life choices, adequate integrated care and research and therapeutic innovation. And that our health and social systems provide funding and create an environment for integrated care and potential innovative treatments, if any one day, and we can count on society\u2019s acceptance and support . We have come a long way, but we aren\u2019t there yet. So I see especially my work at ERN Eye as key to implement adequate Rare Eye Disease and Usher management and roll it out to all over Europe (and beyond).<\/p>\n\n\n\n

Once that all this will be achieved, we wont need patient advocacy any more, because all needs of people living with Usher syndrome will be met by health and social systems and by society at large.<\/p>\n\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

Patient Advocate per la Sindrome di Usher e le Malattie Rare<\/p>\n","protected":false},"author":2,"featured_media":1266,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[27],"tags":[],"class_list":["post-2540","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-intervista-en"],"yoast_head":"\nDominique Sturz - USHER Italia A.P.S.<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/usheritalia.it\/en\/dominique-sturz\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Dominique Sturz - USHER Italia A.P.S.\" \/>\n<meta property=\"og:description\" content=\"Patient Advocate per la Sindrome di Usher e le Malattie Rare\" \/>\n<meta property=\"og:url\" content=\"https:\/\/usheritalia.it\/en\/dominique-sturz\/\" \/>\n<meta property=\"og:site_name\" content=\"USHER Italia A.P.S.\" \/>\n<meta property=\"article:published_time\" content=\"2025-09-01T10:44:35+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-04-21T15:52:59+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/usheritalia.it\/wp-content\/uploads\/2025\/11\/LD-1.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"576\" \/>\n\t<meta property=\"og:image:height\" content=\"768\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"web@bewweb.it web@bewweb.it\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"web@bewweb.it web@bewweb.it\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"6 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/usheritalia.it\\\/en\\\/dominique-sturz\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/usheritalia.it\\\/en\\\/dominique-sturz\\\/\"},\"author\":{\"name\":\"web@bewweb.it web@bewweb.it\",\"@id\":\"https:\\\/\\\/usheritalia.it\\\/#\\\/schema\\\/person\\\/4a3f0e2ceecc3d5315fcb89f5e4d1885\"},\"headline\":\"Dominique Sturz\",\"datePublished\":\"2025-09-01T10:44:35+00:00\",\"dateModified\":\"2026-04-21T15:52:59+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/usheritalia.it\\\/en\\\/dominique-sturz\\\/\"},\"wordCount\":1089,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\\\/\\\/usheritalia.it\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/usheritalia.it\\\/en\\\/dominique-sturz\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/usheritalia.it\\\/wp-content\\\/uploads\\\/2025\\\/11\\\/LD-1.jpg\",\"articleSection\":[\"Intervista\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/usheritalia.it\\\/en\\\/dominique-sturz\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/usheritalia.it\\\/en\\\/dominique-sturz\\\/\",\"url\":\"https:\\\/\\\/usheritalia.it\\\/en\\\/dominique-sturz\\\/\",\"name\":\"Dominique Sturz - 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