Shining the light on rare diseases

FORMER Australian cricket captain Steve Waugh has joined celebrity muscle to help make the public aware of World Rare Disease Day and the frustrations many families endure to receive help.

The Steve Waugh Foundation is the last hope for many families who have a child, or children, afflicted by rare diseases and, on Thursday, World Rare Disease Day, Waugh will join actress Georgie Parker, former Olympic swimmer and author Lisa Forrest and celebrity hairdresser Joh Bailey to highlight the plight faced by 2 million Australians, 400,000 of whom are children, on a daily basis.

''I think there is more recognition for what a rare disease is,'' Waugh said. ''People are starting to recognise 10 per cent of the population has a rare disease.

''Aussies are a race that don't like people to stand alone. They like to stand in their corner and support them and that's what these kids and people are like, they have enormous courage and character.''

Parker, who suffers from scoliosis, or curvature of the spine, said she was inspired by families that sacrifice everything to give an afflicted child a quality life.

''You can gain so much from meeting kids with rare diseases because they're rare people,'' she said. ''The families who have to care for and love these children are as enriched by having them in their lives as you are when you meet them.''

The story Shining the light on rare diseases first appeared on The Sydney Morning Herald.

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