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June 18 2018: Prof John Rasko AO Event: Has Gene Therapy finally lead to a cure for thalassaemia?

Has Genetic Therapy finally lead to a cure for Thalassaemia?

An Education event with a Presentation by Professor John Rasko, AO Head, Gene and Stem Cell Therapy Program, Centenary Institute Head of Department, Cell & Molecular Therapies, Royal Prince Alfred Hospital.

May 8th 2018: We'd love you to Join Us at our free International Thalassaemia Day Event

Please join us to celebrate International Thalassaemia Day on Tuesday May 8th 2018 at The Garvan Institute Auditorium starting at 6.00pm 

Feb 18: International Thalassaemia Day Theme for 2018 Announced

The Thalassaemai International Federation  annoucned the winning theme for #ITD2018 

"Thalassaemia past, present and future: Country practices, progress and growing recognition of patients’ rights".

Dec 17: Children's Picnic - A Great Day - Thank You

We were lucky - we had a beautiful day, sandwiched between two rainy days - and a great time for our Family Picnic on December 3rd. Thanks to all the families who made it a great day and who brought a huge variety of treats to share. To the volunteers, thank you so very much ... your help was amazing.

Nov 17: Our new Committee and Plans for the future

Letter from the President:

Dear Members and Supporters,

Oct: TIF invites patients to give feedback in Global Patient Survey

The following is an edited mesages from the Thalssaemia International Federation (TIF):


Sept 13: Notice of 2017 AGM

Notice of 2017 Annual General Meeting

Dear Members and Friends,

You are warmly invited to attend the 2017 Annual General Meeting of the Thalassaemia Society of NSW.

We encourage all members and supporters to attend to get an update on the Thalassaemia Society's activities and to have an opportunity to provide feedback.

The AGM details are as follows:

Spring 2017 Update: Out & About / Book us for an Awareness Session

The sun is out and a spring in the step:

and we are sharing some positive updates for last few months April - July. During this period, we provided 2 new infusion pumps to patients and supported 4 new counselling referrals. We engaged 400 community members through 6 awareness events and 3 education presentations to community inter-agency networks. Thank you to Judd, Theodora, Marianne, Fay, Nazik and Ghada for their great volunteer support at these events.

Aug 28th: Thal NSW meets SCTI Ireland

As is usual in Ireland, a cup of tea is the most popular brew for a catch-up and we met in the lovely surrounds of the old Gresham hotel.

Lora told me that there are approximately 600 patients in Ireland. The majority of cases relate to sickle-cell anaemia.

SCTI focusses a lot of effort on preventative education ensuring the public, but especially newly arrived communities, are aware of the conditions and testing for genetic traits. Awareness levels vary quite a lot and work is needed to increase awareness among the public at large.

June 22nd: CLINICAL ALERT: New study highlights ‘unsafe’ T2* MRI method being used for iron overload assessment

CLINICAL ALERT: New study highlights ‘unsafe’ T2* MRI method being used for iron overload assessment in thousands of patients

June 19th: Stories for World Sickle Cell Awareness Day

On June 19th we recognise the strength of the of the sickle cell community and spread awareness about carrying the sickle cell trait and the need for testing. This date has been recognised by U.N resolution and is an important day for public health promotion.

June: Support our Red 25 Blood Donation Group

During National Blood Donor Week 11-17 June, we celebrate this country’s 495,000 incredible, life-saving blood donors.

May 2017: Out & About - our activities & connections for International Thalassaemia Day

May 8th 2017, International Thalassaemia Day heart

"Get Connected", supported by Thalassaemia International Federation and World Health Organisation.


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