UsherKids Australia is a not-for-profit charitable organisation that was established in 2016 as a parent-led support group established to enhance the lives of children diagnosed with Usher syndrome and their families in Australia. Usher syndrome is a rare genetic condition characterised by congenital hearing loss or deafness, the progressive loss of vision due to retinitis pigmentosa, and in some cases, vestibular dysfunction. As well as providing direct support to children with Usher syndrome and their families, UsherKids Australia works to create a conduit for clinicians, researchers, service providers, educators, and the general public to come together in the care for children with Usher syndrome, and to further educate them on their specific clinical, educational, and social needs.
Their mission is to ensure children diagnosed with Usher syndrome and their families have access to an informed, committed, and caring community of clinicians, service providers, educators, researchers, and peer support networks to allow them to thrive in their everyday endeavours.
To develop consistent, high-quality information about Usher syndrome.
To educate and support families of children with Usher syndrome in Australia.
To educate and support the clinicians, support services, and their staff who care for children with Usher syndrome in Australia.
To identify limitations in the current clinical practice regarding Usher syndrome and advocate for improved diagnosis and clinical management.
To raise awareness about the need for research into management and treatment of Usher syndrome.
To disseminate the findings of high-quality research related to the treatment, care and support and clinical management of Usher syndrome.
To collaborate with relevant organisations both within and outside of Australia to assist in the dissemination of information related to Usher syndrome.
In 2020, UsherKids Australia released a series of webinars focusing on the latest updates on global clinical research efforts into Usher syndrome, clinical guidelines, how to support your Usher syndrome student in the classroom and more. The educational webinars are available on their website to watch on demand. With a range of Australian and International leaders in support for children with Usher syndrome joining them to present, they believe this is a must for families and health care professionals caring for children with Usher Syndrome in Australia. Your registration allows access to all 15 presentations, 7 Q&A sessions, presentation slides, resource lists and transcriptions. All videos include captions and Auslan interpreting.
To learn more about UsherKids Australia, the USHER IN FOCUS Webinar Series, or Usher syndrome in general, please go to their website, www.usherkidsaustralia.com or contact them at info@usherkidsaustralia.com.
Link to resource on Usher syndrome.
Link to UsherKids Australia logo.
