USH Ambassador for New Zealand

Paul Glover

Kia ora Hello

My name is Paul Glover and I'm a recently retired Anaesthetist, diagnosed with USH 2A.  In retrospect, I have had symptoms of retinal dystrophy (RP) since my teens. Eye diagnosis came at about the age of 40 but the USH only came with genetic testing. This then led me to connect with the Usher Syndrome Coalition through the USH Trust database and for more information. 

Having had a helping career, I am continuing on a journey of learning and keen to facilitate connections in Aotearoa / New Zealand. Hopefully, connections of a social, clinical, and practical nature can be developed regionally, and advocacy, support, and community for those with this syndrome and our supporters to maximise happiness and outcomes generally.   

Ngā manaakitanga / Best wishes

You may contact me at: ambassador.nz@usher-syndrome.org

Resources in New Zealand

  • 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 platform to join. The Usher Syndrome Data Collection Platform, or USH DCP, is hosted by RARE-X, a nonprofit dedicated to accelerating research. 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, date of birth, address, etc.) 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.