Australian Sickle Cell Advocacy Inc (ASCA) is an Australian not-for-profit advocacy and support organisation dedicated to improving the lives of people affected by sickle cell disease (SCD). Based in Australia, ASCA works to raise awareness of SCD, promote early diagnosis, and advocate for equitable access to comprehensive healthcare and treatment. Founded in 2018 in Melbourne, Victoria, ASCA has since expanded to establish chapters across all Australian states and territories. The organisation supports individuals living with sickle cell disease as well as their families by providing reliable information, practical resources, and emotional support. ASCA also facilitates peer connection, coordinates support networks, and engages in national advocacy to improve healthcare services, reduce stigma, and strengthen health outcomes for the sickle cell community.
Awareness & Education: ASCA works to raise public and medical community awareness about sickle cell disease, particularly since it is a relatively rare condition in Australia. They focus on educating healthcare professionals, schools, and the general public about the challenges faced by individuals with SCD.
Advocacy: ASCA plays a crucial role in advocating for policies and practices that improve the quality of life for those affected by sickle cell disease. One of their key successes has been advocating for the inclusion of sickle cell disease in newborn screening programs across Australia.
Support Services: The organization provides support to people living with sickle cell disease, including resources on managing the condition, coping with chronic pain, and improving mental health. They also offer a platform for individuals to connect with others going through similar experiences.
Research and Healthcare: ASCA supports and promotes research into sickle cell disease and aims to ensure that individuals with the condition have access to the latest medical care and treatment. They collaborate with healthcare providers, researchers, and policymakers to ensure that individuals with SCD receive the best care possible.
Community Engagement: Through events such as conferences and forums, ASCA fosters a sense of community among individuals with sickle cell disease and their caregivers. These events allow people to share experiences, learn from each other, and advocate for changes that benefit the sickle cell community.
Australian Sickle Cell Advocacy Inc. (ASCA) is proud to present the 5th Australian Sickle Cell Conference, a national forum bringing together people living with sickle cell disease, families and caregivers, clinicians, scientists, researchers, healthcare professionals, policymakers, stem cell and blood organisations, and community advocates.
This year’s conference marks a significant moment in Australia’s sickle cell journey. It follows the historic introduction of newborn screening for sickle cell disease in Australia—a major milestone achieved after years of sustained advocacy by ASCA and the broader sickle cell community.
But screening is only the beginning. Early diagnosis must be followed by timely access to specialist care, coordinated lifelong management, family education and support, equitable treatment options, and clear pathways from diagnosis through childhood, transition to adult services, and beyond. At the same time, advances in stem cell transplantation, gene therapy and other emerging curative approaches are transforming what may be possible for people living with sickle cell disease.
These developments bring enormous hope, but they also raise important questions for Australia about access, affordability, infrastructure, workforce readiness, donor availability, equity and how emerging therapies can be integrated into the Australian healthcare system.
Under the theme “Curative Therapies for Sickle Cell Disease: Challenges and Opportunities in Australia,” the 5th Australian Sickle Cell Conference provides an important platform to explore these questions and consider what Australia must do next.
The conference will connect lived experience with clinical expertise, research, policy and innovation—creating a national conversation about how Australia can move from early diagnosis to comprehensive lifelong care, and from disease management towards the possibility of cure.
Be part of this important national dialogue, bringing together lived experience, clinical expertise, research, policy and community voices to explore the challenges, opportunities and possibilities ahead.
Register for the 5th Australian Sickle Cell Conference: https://events.humanitix.com/asca-5th-sickle-cell-conference
ASCA provides community sickle cell disease awareness information sessions to different multicultural communities. This outreach program is beneficial for at-risk communities. Information sessions are provided to different educational institutions like TAFE / Colleges / Universities. These sessions are targeting Nursing and Medical Students so that they have an understanding SCD.
These programs give affected families the chance to connect with others in similar situations. They run as quarterly, informal meetups where participants share snacks and drinks while talking through the issues impacting their community. The programs began in late August 2019 and continue to operate.
These programs operate in a similar way to family support networks, but are specifically designed for people living with SCD. They are run by ASCA in collaboration with treating hospitals, providing opportunities for those affected to connect one-on-one and across different age groups, and to address challenges unique to their experiences. Strict policies, procedures, and insurance are in place to ensure a safe and well-managed environment.
Currently SCD is considered a rare disease in Australia and as such there are no known scientific research programs running as there are no funds directed to this disease. Hence ASCA will continue reaching out to Australian Research Scientists to start researching other curative / management options for SCD.
ASCA will continue to highlight the existence of SCD in Australia. Our aim is for everyone from risk areas to get tested for them to know if they have the sickle cell trait. Knowing the sickle cell status will help make proactive decisons.
ASCA provides Sickle Cell resources and information to support individuals, families, and carers with clear, reliable guidance. Find details on symptoms, treatment options, managing pain, and accessing care in Australia. This section also connects you with support services, educational materials, and trusted organisations to help you better understand and manage Sickle Cell.
ASCA is Australia’s first Sickle Cell Advocacy group advocating for the rights of those living with Sickle Cell Disease in Australia. Your donation will advance services for those living with this disease and their families. We thank you for your support.
We are a registered charity with a deductible gift recipient certificate (DGR Status). Sickle Cell Disease affects different multicultural groups and is considered a rare disease in Australia.