I have previously posted about the Australian Inherited Retinal Diseases Register based in Sir Charles Gardiner Hospital in WA. I plead with anybody who hasn't yet registered to give them a call so that we can get a better idea of how many Aussies are affected.
I spoke to the Research Assistant, Ling, who kindly gave me the statistics they have collected so far. Currently there are 147 registered as being affected by Stargardts. Considering we have around 22 million people in the country, that is 0.000735% of the population (if my maths is correct). So let's spread the word and see if we can get all the Stargardt's people to register!
You can also donate your DNA to their DNA bank for future research. I have also convinced my mum, dad and siblings to give blood too (after I told my sister it was a needle in her rear end and she believed me!), so that in the future researchers can analyse the genetics of the disease.
For more information check out the website below or contact Ling Hoffman (08) 9346 2449.
IRD Register