Families rally around Australia to raise awareness of rare diseases.

It is estimated that the ~8000 known rare diseases affect ~1.2 million Australians and have wide-ranging impacts on families, health professionals, health services and the community.

The following organisations will hold activities to raise awareness of rare diseases in Australia.

The Association of Genetic Support of Australasia Inc. (AGSA), formed in l988, is an umbrella group providing support and information for individuals and families affected by a genetic condition. AGSA is working together with our members to raise awareness of Rare Disease Day and is promoting events held around Australia. www.agsa-geneticsupport.org.au

Australian Paediatric Surveillance Unit has been conducting research into rare childhood disorders since 1993 www.apsu.org.au and in February 2009 convened a National Working Group to develop a co-ordinated approach to address the impacts of rare diseases in Australia.

The SMILE Foundation is an Australian charity that helps families whose children suffer from rare diseases. SMILE is holding a cocktail event in order to raise funds for its Family Relief Program and awareness in the community. SMILE is assisting parent groups of rare diseases around the country to hold functions in honour of IRDD. SMILE will also be creating media opportunities via the families we have helped in the last 2 years.

Steve Waugh Foundation: 

“We have been supporting & helping Australian children and families since 2004. I know I really can make a difference and bring hope to children and families affect by rare diseases. To me being Australian is about looking after your mates, taking care of the less fortunate, supporting the underdog and enhancing the spirit that makes all Australian’s unique.” Always 100% ™

(Steve Waugh, AO)

The Steve Waugh Foundation looks forward to working with all charities and organisations that support children and families affected by rare diseases in Australia and we look forward to being a member of the Australian team in this arena.  

www.stevewaughfoundation.com.au

For any media enquiries please contact:

 Trish van Leeuwen

CEO Steve Waugh Foundation Global

trish.vanleeuwen@335enterprises.com

MB: +61 (0) 419 964 290