World Rare Disease Day is about raising awareness about rare diseases and the impact they have on those affected personally and their families.
28 February 2013 is the sixth annual World Rare Disease Day. This year's focus, 'Rare disorders without borders', addresses the problems associated with fighting diseases which affect only a few people in each country. Expertise is scarce and scattered, requiring a re-assessment of current treatment options that would result in cross-border cooperation.
In Australia major organisations supporting rare diseases are coming together to highlight the issues surrounding people, especially children, living with rare diseases.
As one of these organisations, the Steve Waugh Foundation is committed to a coordinated approach to the service, identification, treatment and research of rare diseases to improve the quality of life of children and young people (from birth to 25 years of age) who are affected by rare diseases. Founded by Steve and Lynette Waugh following Steve's retirement from cricket, the Steve Waugh Foundation has provided over 200 families with medication, treatment, specialised equipment and financial support.
During the lead up to Rare Disease Day, the Foundation auctioned The Renee - a house at Wadalba on the Central Coast. Built in partnership with AV Jennings with donations of labour and materials by their suppliers, The Renee was named for Steve Waugh Foundation ambassador Renee Eliades. Renee has geleophysic dysplasia, a rare form of dwarfism.
The house has been designed to be useable by most people over their lifetime, without the need for major adaption or specialised design. It includes features such as limited use of steps, widening of entry way and doorways, as well as bathrooms which can be adapted for better access.
The proceeds from the auction will go towards the SNUG program run by the University of Newcastle's Family Action Centre.
See Steve Waugh's interview about the house on Mornings on Channel Nine last week.