Thalassaemia and Sickle Cell Australia – TASCA (formerly known as Thalassaemia and Sickle Cell Society of Australia, TASC Society of Australia or TASCS Australia) is a not-for-profit organisation was originally founded in 1976 by medical professionals to lobby government authorities for support into medical research and the provision of treatment facilities for patients. In time this group of professionals were joined by families of patients and carers who sought to form a support and advocacy network for those affected by thalassaemia and other genetic related blood disorders.
Originally known then as the Thalassaemia Society of Victoria (TSV), this small but dedicated group put much effort towards raising public awareness of genetic blood disorders like thalassaemia, and encouraging the general public to seek blood testing and family planning as measures to identify and deal with the presence of these genetic haemoglobinopathies. To this effect, a concerted effort was made to develop a free information and education programme that was implemented within the wider community.
However, the task before the TSV was not easy, as many of its members and those affected by thalassaemia or sickle cell anaemia, predominately came from non-English speaking migrant and refugee communities. Thus, linguistic and cultural barriers, played a significant role in preventing those affected in gaining access to family planning, medical support, advice and treatment.
Another challenge was the urgent need to encourage medical providers and governments to become aware of genetic blood disorders, and to provide necessary support and funding for those affected, the provision of treatment facilities and for medical research.
The other key challenge faced, was for the cost and availability of medical items such as infusion pumps, to be supplied for domestic and hospital use. Numerous fundraisers were dedicated towards the acquisition and supply of such medical items, as well as subsidise the cost of ongoing therapy for thalassaemia and sickle cell sufferers.
And finally, the TSV helped form counselling support groups and called upon the services of professional counsellors, for ensuring the general well-being of those affected directly or indirectly by thalassaemia and sickle cell anaemia. Numerous recreational events were also organised to augment these efforts towards general health, morale and well-being.