World Rare Disease Day is to raise awareness about rare diseases and their impact on patients’ lives.
As a ‘rare’ day, 29 February 2012 marks the 5th World Rare Disease Day. Rare Disease Day seeks to bring about positive change to benefit people with rare diseases, which in Australia is defined as one that affects one in 10,000 people or less.
Following a major launch in 2011 with support from the Steve Waugh Foundation, major organisations supporting rare diseases are coming together in 2012 to continue drawing attention to people, especially children, living with rare diseases.
New website launched for Australians
The Rare Disease Day Australia website has lots of information on rare diseases, World Rare Disease Day, the organisations that support the day and their events. Take a look at how you can get involved at www.rarediseasedayaustralia.com.au
Through this website individuals and families can come together and share their stories, and a place for the public to learn more and show their support to those affected by rare diseases in Australia. The website is linked to a Rare Disease Day Australia Face Book page to build a forum and supportive community around Australia to promote and build the Australian Rare Disease Day campaign.
2012 highlights Solidarity
The theme for 2012 is “Solidarity”. An international video has been launched to promote the slogan “Rare but Strong Together” to highlight the fact there are 8000 known rare diseases, the majority of which have a genetic origin. Although each disease is rare, collectively they affect up to 10% of the population. That is up to 2 million Australians (including 400,000 children) affected by rare diseases.
Workshop on Rare Diseases
To mark International Rare Diseases Day 2012, the Australian Paediatric Surveillance Unit is hosting a Rare Disease Workshop on Wednesday 7 March from 9am – 5.30pm.
This Educational Workshop will be held at the Kerry Packer Building, Kids Research Institute, The Children’s Hospital at Westmead and will be provided free of charge to families.
For more information, visit http://www.apsu.org.au/