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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):

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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.

Apr 2017: Thal Soc attends official opening of the Bright Centre

It was a privilege to have the NSW Premier, Gladys Berejiklian, Health Minister Brad Hazzard, and Managing Director Toby Wilson to open the new Bright Centre at Prince of Wales Hospital. The Thalassaemia Society fought very hard for this new facility and it's a huge achievement to see it built. There is still a lot of work to be done to improve the services and care to fully meet our members needs but this is an important step to achieve our end goal.

Our President briefly spoke with the Premier who showed an awareness of Thalassaemia.

Apr 2017: A busy few months behind us and more ahead

We’ve had a busy few months!

Since December, the Thalassaemia Society has provided 7 Infusion pumps for iron chelation to patients. The pumps (Niki T34 Syringe Driver) are expensive, costing several thousand dollars, and Thal Soc is delighted to be able to provide this service due to and thanks to the generous support of members and supporters and fundraising efforts of the Committee. We are deeply grateful for this support.  

Mar 2017: TIF launch Thalassaemia Patients Connect - a shared communication space for patients & associations

Thal Patient Connect

The Thalassaemia Patients Connect project, recently launched by TIF, provides a shared communication space for patients and patient associations worldwide.

2017 Membership - support the Society with advocacy, awareness and resilience-building

Your support, makes our work stronger and all our futures brighter: Applications for membership are now accepted online! Become a Member

Jan 2017: Committee and staff for 2017

The Thalassaemia Society of NSW 2016 AGM was held in November 2016 and a new Committee was elected.

We wish to say good luck to new and continuing Committee members and say a huge thank you and best wishes to the Committee memebrs who have finsihed in their roles.

Thank you for all your time, effort and commitment to the Society and thalassaemia community.

More details will be posted soon.

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