About
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 providing funding for treatment, medical equipment, research and education.
The Thalassaemia Society of NSW Inc. is a registered Charity formed in 1979 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 Annual General Meeting who donate their time and concerted effort for the benefit of Thalassaemia patients in NSW. The Society also has various sup-committees with an experienced committee member in charge to co-ordinate each activity. The financial accounts are audited yearly.
The Executive
President/Chairperson - Martha Gerolemou
Martha started out on the Australian Thalassaemia Action Committee over 20yrs ago and moved into the Thalassaemia Society of N.S.W in the early 90's as an executive committee member and then moving onto the Chairpersons role before taking the role as President. Martha's Passion is raising awareness within the community for Thalassaemia.
Vice President - Marianne Dimitrakas
Marianne currently holds the position of Vice President. She has been involved with the Thalassaemia Society of NSW since 1996 following in her fathers footsteps. Mr John Dimitrakas was one of the Thalassaemia Society of NSW founding members. The first five of those years as a Committee Member & eight as the Asst Secretary, as well as being an active member of the Newsletter Sub Committee.
Ms Dimitrakas' employment background is Reception & Customer Service of which she has eleven years experience.
Treasurer - Lela Dallas
Lela joined the Society in 2010 as an executive committee member.
Secretary - Open Position, if you are interested please contact Coordinator@thalnsw.org.au
Assistant Secretary/ assistant Treasurer - Theodora Michalopoulos
Executive Member - Glenda Hughes
Executive Member - Nicholas Kotrotsos
Executive Member - MD Faisal
Executive Member - Rosa Dimitrakas
Rosa has been on the committee of the Thalassaemia Society of NSW since 1996 when she was first elected as an executive committee member. In 1997 Rosa was duly elected Assistant Secretary, and in 1999 Rosa accepted the position of Secretary, which she held until 2005. In September 2005 until present Rosa has held the position of Assistant Treasurer.
Rosa joined the Society because it is important to her as she has thalassaemia major and believes that there is a need to fight for a better life and awareness.
Coordinator, Thalassaemia Centre of NSW: Nancy Lucich
The Thalassaemia Centre Coordinator of NSW is responsible for the co-ordination of medical, nursing and allied health support services to all those affected by thalassaemia, sickle cell anaemia, blackfan diamond and other blood related disorders in NSW. Nancy is working towards the coordination of the health education programs, while providing support to the Thalassaemia Society of NSW Executive Committee.
Counsellor, Thalassaemia Centre of NSW: Amy Elzahaby
The Thalassaemia Society of NSW meets the 1st Wedesday of every month at 7pm on Level 7 of King George V Building , Missenden Road, Camperdown
January 2012 - NO MEETING
1st February 2012
7th March 2012
4th April 2012
2nd May 2012
6th June 2012
4th July 2012
1st August 2012
5th September 2012
3rd October 2012
7th November 2012
5th December 2012
All members are welcome to attend
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
• 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 for people with Thalassaemia and other haemoglobinopathies
• Promote The World Health Organisation’s (WHO’s) guidelines on the management of Thalassaemia and other haemoglobinopathies
• Bring together patients, families and supporters for information dissemination
• Raise the funds required for the above objectives. The Society will continue its fund-raising activities to support research and welfare needs
• Work with other groups and organisations with an interest in Thalassaemia and other haemoglobinopathies
Foundation Members
Dr Vasili Berdoukas OAM, 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 & Kitza Mihalopoulos, Peter & Ellie Phontos and Sotiris & Mark Tirris.
The Thalassaemia Society of NSW is a member of Thalassaemia Australia (TA), the national body for thalassaemia and haemoglobinopathies. Together we hold two votes as members of the Thalassaemia International Federation (TIF), the global movement for Thalassaemia which is recognised by the World Health Organisation (WHO).
The Thalassaemia Society of NSW would like to thank NSW Health (SSWAHS) for their continued support through their funding of the Thalassaemia Centre of NSW, for the positions of Counsellor and Centre Coordinator, Thalassaemia Centre of NSW.
Disclaimers
