Sickle Cell Disease is a serious inherited condition and the most common genetic disorder around the world. It is affecting millions of people around the world with an estimate of 1000 people impacted in Australia. In recent years, the prevalence of sickle cell disease has increased in Australia. The exact prevalence is uncertain due to the inconclusive data available at the current period. Australian Sickle Cell Advocacy Inc has been working tirelessly to highlight this condition in Australia. Becoming a not for profit organisation in 2018, the road to awareness raising has been a number one mandate since then.
In the process, Australians are now aware that despite having people born in this county over 70 years ago with this disease, we are just learning more about it. In terms of access to medication, the issues faced by these community of patients are similar to those of other countries. The only available drug to manage this condition in this country is hydroxyurea. If for whatever reasons hydroxyurea fails the next best option is blood transfusions. In the last 2 to 3 years, the Bone Marrow Transplant treatment has been available to a few patients. This year, Australian Sickle Cell Advocacy Inc bring the first-ever sickle cell conference in Australia.
The Conference will highlight the significance of talking as way to break the barrier of stigma attached to living with sickle cell disease. This will highlight the importance of mental health services for both patients and caregivers. Individuals with rare diseases are at higher risk of depression and anxiety. 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 experts, and others impacted participate in this conference as well.
We are please to announce that Hon Greg Hunt MP Minister for Health and Aged Care as well as Hon Mark Butler MP Shadow Minister for Health and Ageing will be our Guest of Honour. We would like to thank The Haematology Society of Australia and New Zealand for supporting our conference. Thank you to other rare disease organisations including Centre For Community-Driven Research Australia Syndromes Without A Name – SWAN Australia Rare Voices Australia and Genetic Support Network of Victoria (GSNV) for participating in our conference.
Registration is now open to attend this conference. Register your attendance through this link here.