Welcome To

Sickle Cell

Australian

Advocacy

MISSION STATEMENT

To be the leading advocacy organisation for people affected by Sickle Cell Disease within Australia and beyond.

OUR OBJECTIVES

 

  • 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.

Education

Sickle cell is a manageable condition. Knowledge of triggers and risk factors can help people affected by this condition live healthy fulfilled lives. Our team will support you in maintaining a healthier you, by:

  • Providing the latest information on sickle cell disease symptoms and complications,
  • Providing the most current research information, targeting progress in treatments and pain management,
  • Providing regular social media updates to ensure those affected have access to key information,
  • Promoting awareness of the condition via annual sickle cell awareness day and month events,
  • Engaging community groups and hospitals to provide a platform where awareness of sickle cell disorder can be promoted.

Raising Awareness

  • Our main aim is to engage 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 cure options for this condition that are less invasive and easily accessible for all.
  • Join us as we embark on a journey to change the face of sickle cell disease.

Support Networks

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.

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