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

GET CONNECTED! SHARE KNOWLEDGE AND EXPERIENCE AND FIGHT FOR A BETTER TOMORROW IN THALASSAEMIA

What is International Thalassaemia Day?

For the global thalassaemia community, May 8th is a very special day as it is dedicated to both commemorate the thalassaemia patients who are no longer with us and to celebrate all those patients who are fighting every day to improve their lives and achieve their dreams. It also provides a focal point around which to build awareness within the community, especially those from higher risk communities, who may be unaware that they carry the altered gene.

Communtiy Activties around Sydney:

We spoke with almost 210 people across the 4 days. Many of the people, probably about 70-80%, were unaware of either thalassaemia or sickle-cell anaemia. There was a wide spread of people from many different ethnic backgrounds. It was great to raise their awareness and a big thank you to the hospitals who supported us with time and space. 

In the days around May 8th we were out and about raising awareness of thalassaemia and sickle-cell anaemia through information stands at Liverpool Hospital, Royal Prince Alfred (RPA) and Prince of Wales Hospitals as well as dropping treats into patients and staff at treatment centres in Sydney. To see photos please visit our Facebook page

We also met several people who were carriers of the genetic trait. Their questions ranged from information on family planning, lifestyle and diet, how to deal with feeling tired and anaemic.

We saw a few people with thal major who came to say hi and two of whom who learned about different supports they could access. We met parents who have themselves or have children with Hemochromatosis, G6PD deficiency and Sickle-cell anaemia.

Our aim was to spread awareness of Thalassaemia & Sickle-cell anaemia and encourage people to talk to their family doctor about having a simple blood test.

We also hoped to meet patients and families and listen to your ideas and feedback.

 

Thank you for coming to see us at our info & awareness stand at Fairfield Families Week, Neeta Shopping Centre, Fairfield

It was a great event and really well organised with lots of community information stalls and children's activities including multi-lingual story telling. We spoke with about 60 parents from a wide variety of backgrounds. Thank you to Fairfield Council & Fairfield Families Facilitation Project for the invitation to attend.

Thank you to Judd and Theodora from the Committee who helped Cyril and Amy with these events; and a huge and grateful thank you to Ghada, Fay and Nazik who supported our communications with the Arabic speaking community. Their facilitation made the events a great success.

Check out our Facebook page for updates from the Thalassaemia Community

 

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Update: In June, for world Sickle-Cell Awareness Day (June 19th) we held awareness events at RPA and Liverpool Hospitals reaching almost 100 people over 2 days. We chatted with a mid-wife who was treating a person with sickle-cell trait, we met 5 people with questions about lifestyle and family planning who had sickle cell trait as well as 2 thalasaemia minor carriers. We were also delighted to be able to chat with some young medical students who had questions about thalassaemia and sickle cell anaemia.

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