Who we are

Australian Sickle Cell Advocacy Inc (ASCA) is a not for profit organisation started in 2014 and formally registered in October 2018. It is a family/professionals initiative dedicated to people living with sickle cell disease. 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.

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

  • Bridge the gap between the people affected by SCD and medical providers,
  • Help remove the stigma associated with living with SCD,
  • Provide information to encourage screening in at-risk individuals who will be empowered to make informed decisions,
  • Provide education to communities and relevant stakeholders to raise awareness about sickle cell disease in Australia
  • Advocate for every hospital to proactively screen potentially at-risk parents and babies during gestation, or at birth,
  • Advocate for a standardised approach to disease management programs where all symptoms are proactively monitored and managed,
  • Advocate for Australian SDC National guidelines
  • Advocate for a conclusive SCD surveillance database in Australia
  • Advocate to have all medications used to manage  SCD to be on the 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”