About us

41 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, while leading community education and awareness-raising of the need for testing and providing funding for treatment, medical equipment and research.

The Thalassaemia Society of NSW Inc. is a registered Charity formed in 1978 as a non-profit, self-help Society by the families of children suffering from thalassaemia, sickle cell anaemia and blackfan diamond disorder, with the support and guidance of the treating health professionals.

The Thalassaemia Society of NSW is the chief fund raising body supporting the comprehensive thalassaemia services at Sydney Children's Hospital, Randwick, Prince of Wales Hospital, Randwick, the Children's Hospital at Westmead, the Adult Hospital at Westmead, Royal Prince Alfred Hospital Camperdown, and at Liverpool Hospital. It has also been instrumental in negotiating the optimum provision of service to the patients at these hospitals. To continue with this financial support the Society organises fund-raising functions during the year.

The Society is administered by a volunteer Committee elected at the AGM who donate their time for the benefit of patients and families in NSW. The Society also has various sub-committees and its financial accounts are audited yearly.

View our Corporate Plan to see our objectives and goals set for 2018 and beyond.

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 eduction sessions
  • Raise the funds for the above objectives.
  • Work with other groups and organisations with an interest in Thalassaemia and other haemoglobinopathies

The Committe of the Thalassaemia Society of NSW meet every month

Founding Members

Founding Members and Supporters
 With Thanks and Gratitude Dr Vasili Berdoukas Professor Ron Trent
Dr Bau Dr Sandy Robertson Dr Boyd Webster
John & Angela Dimitrakas Elizabeth Karamihalis Niki Lampitsi & Jane Lampitsi
Mary Lathourakas Alex & Effie Margaritis Fred & Maria Matsas
Jim & Kitsa Michalopoulos Peter & Ellie Phontos Sotiris & Mark Tirris

The Thalassaemia Society of NSW is a member of Thalassaemia Australia (TA), the national body for thalassaemia and haemoglobinopathies. We work closely with TASCSA (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.

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