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
Chairperson - Martha Gerolemou
President - Irene Alaveras
As a Mother of a Thalassaemia patient Irene has been involved with the Society for many years, her ongoing support and compassion for other patients and their family members has now led her to take on the role as President.
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 - Maria Aravantinos
Maria is a registered nurse specialised in Intensive Care.
Maria's mother, Dina, who was an Executive Committee member for 15 years, inspired Maria to become involved in the Thalassaemia Society of NSW. Once eligible, Maria joined the committee. In the last 13 years she has held various positions including Executive committee member, Asst. Treasurer, Vice President, President and now holds the position of Honorary Treasurer. Maria has represented the Thalassaemia Society of NSW on the Australian Thalassaemia Association (ATA) Board, as well as having represented Australia on the Thalassaemia International Federation (TIF) Board as a delegate.
Asst Treasurer - 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.
Secretary - Theodora Michalopoulos
Asst Secretary - MD Faisal
As Assistant Secretary, MD's role is to record the Correspondence from the monthly executive meetings, as well as recording the Minutes in the Secretary's absence.
Press Secretary -
Executive Member - Johnny Alaveras
Executive Member - Maria Santos
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
4th November 2009
2nd December 2009
January 2010 - NO MEETING
3rd February 2010
3rd March 2010
7th April 2010
5th May2010
2nd June 2010
7th July 2010
4th August 2010
1st September 2010
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
