info@aussicklecelladvocacy.org

1300 148 824

Australian Sickle Cell Advocacy Inc.

info@aussicklecelladvocacy.org
1300 148 824
Australian Sickle Cell Advocacy Inc.
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Supporting People Living With Sickle Cell Disease In Australia And Beyond
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Australian Sickle Cell Advocacy Inc.

Aus Sickle Cell Advocacy

Australian Sickle Cell Advocacy Inc. (ASCA) is an advocacy and support organization based in Australia that works to raise awareness about sickle cell disease (SCD) and improve the lives of individuals affected by this condition. ASCA is committed to supporting individuals with sickle cell disease, as well as their families, by providing information, resources, and advocating for better healthcare, early diagnosis, and comprehensive care.

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.

 

Key Areas of Focus:

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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.

Newborn Screening for Sickle Cell Disease

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4TH SICKLE CELL SCIENTIFIC CONFERENCE

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Join us for the 4th Sickle Cell Scientific Conference on October 24th, 2025, in Perth, Australia, just one day before The Blood Conference organized by The Haematology Society of Australia and New Zealand.

This year’s theme focuses on a critical issue for warriors and caregivers—managing chronic pain and its impact on mental health, a topic chosen by warriors themselves. We’ve crafted a comprehensive program addressing this and other vital subjects. Save the date and be part of this important discussion.

If you’re interested in speaking or attending, please submit your expression of interest here: https://aussicklecelladvocacy.org/contact/

Our Services

Community Outreach

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.

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.

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

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.

Community Outreach

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.

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.

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

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.

Support Our Cause

Australian Sickle Cell Advocacy
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
sickle cell disease
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
donate-blood
Donate Blood
  • 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.
DONATE BLOOD
Australian Sickle Cell Advocacy
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
sickle cell disease
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
aussicklecelladvocacy
Donate Blood
  • 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.
DONATE BLOOD

Recognised by Department of Health

Make A Donation

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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.

CLICK HERE TO MAKE A DONATION
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