Who we are

Australian Sickle Cell Advocacy Inc (ASCA) is a not for profit organisation supporting people living with Sickle Cell Disease (SCD) in Australia. It is the peak body in Australia looking out for people affected by this disease. ASCA started in 2014 and formally registered in October 2018.Our head office is based in Melbourne with chapters or representatives in other States or Territories across Australia.  Our main objectives stands out to raise awareness about this disease that is considered a rare disease in Australia. We are also tirelessly looking out for services that are missing in these community of people. We have been approaching different policy makers to ensure SCD is recognised just like any other chronic disease in Australia. To ensure that all medications that are used to manage this disease are accessible for all; To have screening available in Australia for SCD; To ensure that all healthcare workers are aware of disease, these and more reasons are why we started this initiative. 

ASCA will continue to engage with people in discussing sickle cell disease, not only in Australia but all over the world. We also want to encourage research scientists to continue working on finding other curative options for this condition that are less invasive and easily accessible for all: Our main aims include:

  • Encourage discussions to remove the stigma associated with having SCD,
  • Provide education to communities and relevant stakeholders to raise awareness about SCD in Australia
  • Advocate for SCD prenatal / newborn screening
  • Advocate for Australian SCD National guidelines
  • Advocate for a conclusive SCD surveillance database in Australia
  • Advocate to have all medications used to manage SCD included on The Pharmaceutical Benefits Scheme (PBS)
  • Gain recognition and access to services for chronic conditions by The Department of Health / Medicare.
  • Organise fundraising activities that contribute towards sickle cell research.

Join us as we raise our voices because “Together we will rise”