Exploring the support needs of parents and carers of young children with Usher syndrome

Partner Organisation: Usher Kids Australia
https://usherkidsaustralia.com/ 

The project seeks to better understand the support needs of families of children with Usher syndrome and build some evidence to inform better services for families.

Research Team: 
Usher Kids - Ms Emily Shepard, Ms Lauren Johansen
University of Melbourne - Associate Professor Karyn Galvin, Associate Professor Lauren Ayton
Centre for Eye Research Australia - Ms Fleur O’Hare, Ms Lisa Kearns
University of South Australia - Dr Lemuel Pelentsov

Publications:
Pursuit Article, "Bringing answers to children with a little known genetic condition, A University of Melbourne collaboration is helping to uncover the real needs of children and families facing a future with Usher Syndrome" 24 May 2021.  https://pursuit.unimelb.edu.au/articles/bringing-answers-to-children-with-a-little-known-genetic-condition

Research Outcomes:
This project has led to further research to support the needs of children with Usher syndrome and their families. Details for the two new projects, The awareness level of Australian clinicians regarding Usher syndrome and Genetic Counselling will be provided shortly.