To be the leading advocacy organisation for people affected by Sickle Cell Disease within Australia and beyond.
- Bridge the gap between the people affected by SCD and medical providers,
- Help remove the stigma associated with living with SCD
- We will continue doing this by openly talking about sickle cell disease on all social media platforms and our everyday lives
- Encourage other people to also be part of the discussion.
- Provide information to encourage screening in at-risk individuals who will be empowered to make informed decisions,
- Advocate for every hospital to proactively screen potentially at-risk parents and babies during gestation, or at birth,
- Advocate for a standardised approach to disease management programs where all symptoms are proactively monitored and managed,
- Standardised care can only be done if all hospitals follow National guidelines to treat sickle cell disease.
- Currently, Australia does not have National Sickle cell disease guideline
- As an association, we aim to advocate for the formation of the National guidelines to assist with the same approach across all hospitals / general practitioners when treating sickle cell disease
- Gain recognition and access to services for chronic conditions by The Department ofHealth / Medicare,
- Organise fundraising activities that contribute toward sickle cell research.
- Sickle cell research will assist in finding other curative options
- However, we need to first advocate for a sickle cell database that is equally missing in Australia at the moment.
- By knowing the prevalence of the disease, we will encourage more scientists/pharmaceutical companies to sponsor sickle cell research.
We are a team of parents, friends, and professionals committed to helping other families and people affected by this condition. We do this by:
- Providing emotional and moral support through community support group meetings, patient visitations, family get-together gatherings and any other form of support that will improve the well-being of affected community members.
- Providing information and referrals to patients and carers by linking them to known doctors and other professionals.
- Having quarterly information sessions in communities that are likely to be affected by this condition
- Sharing common experiences
- Encouraging our members or individuals coming from at-risk backgrounds to go for genetic testing and/or counselling for them to know their sickle cell status.