Over 40 years and growing – Inform, Support, Research

Our Mission

To provide social support and advocacy for patients and carers of patients with thalassaemia, sickle cell anaemia, blackfan diamond disorder and other haemoglobinopathies.

We also aim to continue being leaders in community awareness and education around the need for testing and providing funding for treatment, medical equipment and research.

Our History

The Thalassaemia and Sickle Cell Society of NSW is a registered charity that was formed in 1978 as a non-profit, self-help group organised by the families of children suffering from thalassaemia, sickle cell anaemia and other haemoglobinopathies.

Formed with the support and guidance of treating health professionals, the society continues to serve patients and their families as the chief advocacy, support and fund-raising body for comprehensive Thalassaemia and Sickle Cell in NSW and the ACT.

It has also been instrumental in negotiating the optimum provision of service to patients. To continue with this support the Society organises education, social and fundraising functions throughout the year.

The Society expresses sincere thanks and gratitude to the following founding members:

Founding MembersDr. Vasili BerdoukasProf. Ron Trent
Dr. BauDr. Sandy RobertsonDr. Boyd Webster
John & Angela DimitrakasElizabeth KaramihalisNiki & Jane Lampitsi
Mary LathourakasAlex & Effie MargaritisFred & Maria Matsas
Jim & Kitsa MichalopoulosPeter & Ellie PhontosSotiris & Mark Tirris

Our Objectives

The Thalassaemia Society of NSW is a non-profit organisation that was established to:

  • Ensure that all persons suffering from Thalassaemia, Sickle Cell Anaemia, Blackfan Diamond, and other blood disorders in NSW receive the optimum standard of treatment,
  • Raise awareness of Thalassaemia and other haemoglobinopathies where they are not recognised as priorities in public health and promote awareness of testing for the genetic trait,
  • Provide assistance and support to patients and to families of patients suffering from Thalassaemia and other haemoglobinopathies,
  • Support and encourage medical and social research projects designed to improve the quality of life,
  • Promote The World Health Organisation’s guidelines on the management of haemoglobinopathies,
  • Bring together patients, families and supporters for social, information and education sessions,
  • Raise the funds for the above objectives, and
  • Work with other groups and organisations with an interest in Thalassaemia, Sickle Cell Disease and other haemoglobinopathies.

 

View our Corporate Plan to see our objectives and goals set for 2020 and beyond.

The Society is administered by a volunteer Committee who donate their time and expertise for the benefit of patients and families in NSW and the ACT.

The Society also has two part time staff, a Centre Coordinator and Counsellor, both located in our offices in Camperdown, Sydney.

 

The Thalassaemia Society of NSW is a member of Thalassaemia Australia (TA), the national body for thalassaemia and haemoglobinopathies. We work closely with TASCA (Victoria) and together we hold two votes as members of the Thalassaemia International Federation (TIF), the global movement for Thalassaemia which is recognised by the WHO.

The Thalassaemia Society of NSW would like to thank NSW Health (SSWAHS) for their continued support through their funding for the positions of Counsellor and Centre Coordinator.