Rare Disease Day by the Genetic Support Network of Victoria
28 February 2020
The Royal Children's Hospital HELP Centre: Vernon Collins Room, Parkville
Hosted by Genetic Support Network of Victoria
Rare Disease Day is an annual event for the Victorian Support Sector and will be held from 9:30am – 4.30pm at the Royal Children’s Hospital in Parkville.
The Australian Bureau of Statistics advised in 2019 that there are more people in Australia with rare disease than with diabetes. Rare Disease Day provides an opportunity to focus on this part of our community that is often fighting for their voice to be heard. In 2020, Rare Disease Day will focus on collaborative advocacy opportunities that are putting rare disease on the agenda. It is also an annual international day, always occurring on the last day of February.
The Genetic Support Network of Victoria (GSNV) was established in 1997 in recognition of the importance of a broad consumer voice in genetic health, acknowledgement of a gap in existing support for many rare, undiagnosed and genetic conditions and to increase awareness of the challenges faced by people with genetic conditions and those who support them. Rare Disease Day is one way we fulfil our purpose.
Our event will focus on ‘Finding Your Voice’ for support groups and include a workshop on preparing themselves for successful advocacy. All are welcome to attend.
This continues to be a critical time for the support sector and we look forward to continuing our work to allow all Victorians to flourish and achieve their possibilities.
Register here and please share amongst your network: https://rddgsnv.eventbrite.com.au
If RSVPing, please let us know if you have any dietary requirements.