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 disease, 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 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”