Australian Sickle Cell Advocacy Inc (ASCA) is a not-for-profit organisation supporting people living with sickle cell disease (SCD) in Australia. It is Australia’s first Sickle Cell Advocacy group advocating for the rights of those living with Sickle Cell Disease in Australia as well as 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.
ASCA will provide community sickle cell disease awareness information sessions to different multicultural communities. This outreach program will be beneficial for at-risk communities. Information sessions will also be provided to different educational institutions like TAFE / Colleges / Universities. These sessions will be targeting Nursing and Medical Students so that they have an understanding SCD.
Family Support Networks
These ASCA funded programs will allow families affected to share life with people going through similar situations. These will be quarterly informal meetings between different people affected sharing snacks / drinks while discussing issues affecting these community of people. Programs commence in late August 2019.
Peer to Peer Support Programs
These programs are similar to family support networks, however, they are specifically for people with SCD. These programs will be run by ASCA with the help of treating hospitals to give an opportunity for people affected to engage one on one or between different ages and tackle issues that only people that are affected go through. Strict policies/ procedures and Insurance will be in place.
Sickle Cell Disease Awareness
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.
Provide Resources and Information
ASCA has partnered with international organisations to bring advanced resources and information on sickle cell disease. With the permission of different hospitals, ASCA will provide printed materials to hand out to patients / clinicians for easy understanding of this condition. Information will be very beneficial for remote hospitals / centers as this disease is considered rare in Australia.
Advocate for Scientific Research
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.
In recent years, Sickle Cell Disease (SCD) which is still considered as a rare disease, has steadily been increasing in Australia. It is affecting a lot of people but unfortunately, Australia does not have a complete surveillance database to determine the exact numbers.
Australian Sickle Cell Advocacy Inc (ASCA) brings you this conference to provide mental health resources to patients/caretakers, highlight screening & treatment, advocate for a national surveillance database, and raise awareness to all stakeholders. Join us for a two day event of virtual interaction as we continue to change the face of sickle cell disease in Australia.
Australian Sickle Cell Advocacy Inc is proud to share that we have both Hon Greg Hunt MP Minister for Health & Aged Care and Hon Mark Butler MP Shadow Minister for Health & Ageing as Guest of Honour to our Inaugural Conference.
Even though Australia does not have a conclusive database to know the exact number of people impacted by Sickle Cell Disease, experts estimate that we have 1000 people. This conference will highlight sickle cell disease management, challenges, research, and technology in Australia. We have lined up Australian experts and all other stakeholders to participate in this conference. ASCA will have international speakers participate in this conference.
We would like to thank both Hon Hunt and Hon Butler for their work in recognising people living with sickle cell disease in Australia. We look forward to welcoming them to our conference.
Support Our Cause
Become a Member
Become an ASCA member to get all the latest information on Sickle Cell Disease in Australia and other parts of the world.
You will be the voice for people affected by this condition by having a say through your voting rights at our general meeting.
Get the latest news and updates through our quarterly newsletters and routine updates.
Having created the first-ever SCD support group in Australia, our primary objective is to ensure that we have our members supported.
Join us for routine catch-ups with other families going through similar challenges. We cherish our team activities and we would like you to be on board.
Have your say and identify gaps affecting people living with sickle cell disease. We are registered in NSW, QLD, SA, VIC and WA.
Register to join
Support Our Work
We are a private not for profit organisation raising awareness about Sickle Cell Disease in Australia.
We are also supporting people affected by this condition considered rare in Australia.
We do this by providing information and educational materials.
We are also meeting different multicultural groups to raise awareness.
We also lobby government to improve services for communities affected by this genetic disorder.
We are advocating for more scientific research and clinical trials to have curative options for all.
We are a fully registered charity with a deductible gift recipient certificate.
Every financial support you give us is Tax deductible.
Thank you for your support.
Donate to ASCA
Sickle Cell Disease is mainly treated by targeting the symptoms or complications that come with living with this disease.
With pharmaceutical treatment only limited to one drug at the moment in Australia, blood transfusion is one the most successful treatment options to manage this disease.
Regular blood transfusions or routine red cell exchange can only become possible with the help from blood donors.
Support people living with Sickle Cell Disease by donating blood.
With every blood donation, you are saving three lives.
Make an appointment to donate today.
Follow the link below.
Thank you for your support.
Recognised by the Federal Minister for Health
Hon Greg Hunt September 2020 SCD Message
Make A Donation
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.
Sponsors & Supporters
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.