Thalassaemia and Sickle Cell Australia (TASCA) is a support and advocacy organisation for Australians living with genetic haemoglobin disorders. A not-for-profit organisation, TASCA is overseen by a voluntary management committee, and funded through donations and support from the Victorian Government.
TASCA puts great effort towards raising public awareness of genetic haemoglobin disorders including thalassaemia and sickle cell disease. We also provide a free information and education program to high school students and the wider community to encourage carrier testing for haemoglobin disorders to assist with family planning decisions. TASCA also aims to empower those living with a genetic haemoglobin disorder to live their best lives, and to provide them with support each step of the way.
TASCA serves an important role in providing advocacy for patients with thalassaemia, sickle cell disease and other related genetic haemoglobin disorders by:
- lobbying for funding to meet medical and other support needs
- ensuring patients receive the best hospital care
- ensuring individuals living with these conditions aren’t kept in the shadows of the political and social systems.
Community education is one of the most important roles of TASCA. TASCA regularly presents to schools, community organisations and the healthcare sector to help spread awareness and understanding of:
- genetic haemoglobin disorders
- the value of carrier testing to understand the risk of having an affected child
- the role of genetic counselling prior to starting a family
- the importance of blood donations
- the role that TASCA plays in the community.
TASCA supports those living with a genetic haemoglobin disorder and their families by:
- connecting people in similar circumstances
- providing the latest information on research and treatments
- organising fundraising events to spread awareness and raise donations
- holding social activities to promote morale and well-being
- raising donations to purchase infusion pumps to treating centres
- providing amenities at treatment centres to improve mental and social well