Sickle Cell Disease is rare in Australia, therefore many people are not aware of it. The Haemoglobinopathy Registry (HbR) through the Public Health and Preventative Medicine at Monash University have a program to collect data on the prevalence of Sickle Cell Disease in Australia. HbR is a national register of patients in Australia with blood disorders which include SCD.
One of our objectives is to lobby for increased funding to support the expansion of the Haemoglobinopathy Registry. To find out more about the work of the HbR, please click here.
Australian Sickle Cell Advocacy Inc (ASCA) is a patient advocacy group supporting the rights of people living with Sickle Cell Disease (SCD) as they navigate the healthcare system in Australia. ASCA is a non-profit organisation started in 2014 and officially registered in October 2018. An advocacy group formed to fill the gap of highlighting the rising numbers of sickle cell disease in Australia. Although rare in some part of the world like Australia, sickle cell disease is affecting a lot of people.