2021 Rare Disease Day

Friday, February 26, 2021 5:32 pm
Reading Time: 2 minutes

300 million people worldwide have some form of Genetic or Rare Disease.

Diseases are classified as rare if they affect less than one in 2000 people. So, rare diseases are not so rare after all.

1.3 million Australians have been diagnosed with a rare condition, 400,000 of those are children.

Senior Project officer Lesley Stedman from the Genetic and Rare Disease Network, joined by Rare Disease Day Advocate Andrew Bannister dropped in for a chat with Mike.

Andrew, 29, was born with three rare brain malformations. He was diagnosed with complex cortical brain malformation when he was 17 years old. Periventricular nodular heterotopia with overlaying Polymicrogyria (posterior subtype) and Cerebellar hypoplasia.

Lesley said, “There are a small number of people in Australia who have similar brain changes and with club feet but there is no one exactly like Andrew.”

He’s organised 63 landmarks around the world to be lit up in the Rare Disease Day colours. Including 18 in WA.

As an avid cyclist, Andrew has won numerous Australian Paracycling titles, including the Championship for the National Road series, 2019. He is participating in the 40km Bridges Night Ride around Perth Saturday night 27th February.

Andrew loves giving back to the community.

“Being diagnosed with a rare disease was a blessing for me because now I know how special we are. Yes, we may have difficult paths to navigate but our indomitable spirit and resilience will make us better human beings.” – Andrew

International Rare Disease Day is this Sunday 28th February.

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Listen to the whole conversation below

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