About this event
Rare Disease Day is an international day that takes place on the last day of February each year. The day raises awareness of rare diseases and the importance of equity, diagnosis, clinical trials, treatments, therapies, and inclusion.
Join Carer Gateway – Wellways Australia, Community Junction and SWAN in raising awareness about rare diseases. Learn about the impact of living with someone who has a rare disease from our community and hear from a geneticist about the impact of rare diseases in Australia. Discover what Carer Gateway-Wellways Australia can offer in terms of services to support carers.
Our Rare Disease Day event will be hosted by Heather Renton (SWAN Australia) and Deborah Cameron (Carer Gateway – Wellways Australia)
Our guest presenters include:
- Belinda Donkin-Evers (parent of an undiagnosed child)
- Dalal Baumgartner (parent of a child with SATB2)
- Jane Ellul (parent of a child with KAT6A and Community Junction)
- Miya St John (PhD candidate, speech pathologist, and research assistant in speech and language) Miya has been researching speech and language development in KAT6A and KAT6B individuals.
- Tracy Dudding-Byth (geneticists and founder of FaceMatch)
A live panel discussion will follow our speakers’ presentations and a lucky draw prize. All event attendees who reside in Australia who complete our post-event survey will receive a carer gift pack and go in the draw to win one of three $100 Uber Eats Vouchers.
Please register by Thursday, 24 February, noting any access requirements to attend our virtual event. e.g., Auslan interpreter). For more information, please contact Heather at SWAN 0404 280 441 or email events@swanaus.org.au
Register here: https://www.eventbrite.com.au/e/rare-disease-day-tickets-249033946237