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 are to:
- Raise awareness of this condition that is considered a rare disease in Australia
- Identify services that will benefit affected people
- Engage with policymakers to ensure SCD receives recognition like other chronic conditions in Australia
- Ensure that all medications used to manage SCD are accessible for all affected individuals
- Ensure that universal SCD screening is available in Australia
- Ensure that all healthcare workers are aware of the disease, these and more are reasons 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, less invasive and easily accessible options for all.
We aim to:
- Encourage discussions to help 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”
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.