Maria Vamvakinou (Calwell, Australian Labor Party) Share this | Link to this | Hansard source

In June this year a very important health advocacy group was launched by my constituent Agnes Nsofwa. As her local federal member I was absolutely honoured to be given the opportunity to officially launch Australian Sickle Cell Advocacy Inc at the Royal Children's Hospital in Melbourne. It was very much a Calwell family event because our local CSL in Broadmeadows were the main sponsors of this very important launch. It was also great to see teachers from the Good Samaritan Primary School at the launch where the young Mapalo, who suffers from sickle cell, is a student. I thank Agnes Nsofwa, the group's executive director and founder, for all her work in raising awareness about sickle cell disease in Australia.

Sickle cell disease is a rare disease caused by abnormal protein in red blood. Signs and symptoms of sickle cell disease can vary in terms of manifestation and the age when they first present. It's a real issue and it's becoming a bigger issue in our community. I am very pleased, therefore, that this awareness-raising Australian sickle cell advocacy group has formed. Agnes tells me that daughter Mapalo's personal journey as a sufferer of sickle cell disease has been a very difficult one and a very challenging one for the family. Agnes decided to set this organisation up because she realises that there is very little known around identifying sufferers of sickle cell disease. Agnes, when she did come to see me, said that while there were many people in the community who were sufferers, they didn't have an adequate database that was able to track the number of people in our community that actually suffer from sickle cell disease and that this was affecting the capacity for research.

I'm very pleased that the Royal Children's Hospital has been involved over a long period of time with the thalassaemia A and B research. Now they have focused on sickle cell disease, which is going to be a lot more prominent in our community as our migration patterns from the African continent, as well as from the southern Mediterranean, see a larger number of Australians possibly carrying this gene. Therefore the whole purpose of the organisation and the launch was to raise awareness and help our very highly skilled medical profession find ways to assist people with sickle cell disease.