About Us

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.

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

Dr. Bau
John & Angela Dimitrakas
Mary Lathourakas
Jim & Kitsa Michalopoulos
Dr. Vasili Berdoukas		 Dr. Sandy Robertson
Elizabeth Karamihalis
Alex & Effie Margaritis
Peter & Ellie Phontos
Prof. Ron Trent		 Dr. Boyd Webster
Niki & Jane Lampitsi
Fred & Maria Matsas
Sotiris & 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.