USH Ambassador for the Czech Republic - Anna Radova

Welcome / Vítejte 

Jmenuji se Anna Radová a jsem ambasadorkou organizace Usher Syndrome Coalition pro Českou republiku. Do komunity lidí s Usherovým syndromem jsem vstoupila poté, co byl mému synovi diagnostikován Usherův syndrom typu 1D (USH1D), vzácné genetické onemocnění způsobující vrozenou hluchotu, poruchu rovnováhy a postupnou ztrátu zraku. Stejně jako mnoho dalších rodin jsem po diagnóze zjistila, jak obtížné může být najít srozumitelné informace, zkušené odborníky a další rodiny se stejnou zkušeností. Chyběly české materiály, kontakty i propojení mezi pacienty. To, co původně začalo jako snaha pomoci vlastnímu dítěti, se postupně změnilo v úsilí pomáhat i ostatním rodinám. Dnes se věnuji propojování českých pacientů a jejich blízkých, zvyšování povědomí o Usherově syndromu, podpoře výzkumu a vytváření zdrojů informací v českém jazyce. Jsem také spoluzakladatelkou pacientské organizace Společně pro Usherův syndrom (SPUS) a spolupracuji s mezinárodními pacientskými organizacemi, výzkumníky a rodinami z celého světa. Mým cílem je, aby žádná rodina v České republice nemusela diagnózu Usherova syndromu zvládat sama.

My name is Anna Radová and I am the Usher Syndrome Coalition Ambassador for the Czech Republic. I became involved in the Usher community after my son was diagnosed with Usher syndrome type 1D (USH1D), a rare genetic condition causing congenital deafness, vestibular dysfunction, and progressive vision loss. Like many families, I experienced how overwhelming and isolating a diagnosis of Usher syndrome can be. I struggled to find information in Czech, to identify experienced professionals, and to connect with other families facing similar challenges. What began as a search for answers for my own child gradually became a commitment to helping other families. Today, I work to connect Czech families, improve access to reliable information, raise awareness of Usher syndrome, and support research efforts aimed at developing future treatments. I am also a co-founder of Společně pro Usherův syndrom (SPUS), a Czech patient organization, and I actively collaborate with international patient organizations, researchers, and families around the world. My goal is simple: no family in the Czech Republic should have to face an Usher syndrome diagnosis alone. 

Připojte se ke globální komunitě | Resources in the Czech Republic

  • The USH Trust is the largest international contact database of individuals with Usher syndrome. Created and maintained by the Usher Syndrome Coalition, it is our most powerful tool to connect and inform individuals living with Usher worldwide. The USH Trust allows us to get to know and serve the community better, and to do what we do best: identify, build, support, and connect the community, both within the Usher community and with the research community. We do this via email, telephone, videophone, social media, webinars, local social events, our USH Connections Conference, and the many resources on our website. Come, join us!

  • Individuals with Usher syndrome who are passionate about research have a new data collection program to join. The Usher Syndrome Data Collection Program, or USH DCP, is powered by RARE-X, a program of Global Genes a nonprofit dedicated to accelerating research in the rare disease community. By entering your health information into this secure platform, you will become part of a global database of de-identified information available to researchers worldwide. That means that only you can see your data. Only you can change your data. Your personal information (name, email address) will not be shared without your permission. As the DCP grows, more researchers will become aware of Usher syndrome. This can lead to the development of clinical trials, new treatments, and new therapies. YOU hold the key to unlocking future research discoveries.

  • Established in 1991 - connects deafblind citizens, their family members, and all the others (professionals, volunteers, and the general public) interested in deafblindness.