Awareness, Screening

For many years the society has been working hard to create awareness at a local and a national level.

For many years the society has been working hard to create awareness at a local and a national level.

Our work with the government has resulted with thalassaemia being included into the UK’s National Screening Programme and the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia.

The work of the APPG involves discussing topics of importance to the sickle cell and thalassaemia community and reporting back to Parliament, with the ultimate aim of reducing health inequalities faced by sickle cell and thalassaemia sufferers.


Like so many Asians when I first heard of Thalassaemia my first reaction was thala …. what? Having then obtained information and understood the relevance of this devastating condition to the Asian communities my second reaction was to ask – well why don’t we know about it then?

Having now been involved as a Patron of the Asian Awareness Project of the UK Thalassaemia Society I have learned much more about the condition and the challengers for health education and the public’s needs to undertake screening. This project, which was designed and delivered by the UK Thalassaemia Society, has demonstrated that teamwork by dedicated individuals can make such a large difference to our lives.

Thalassaemia is the commonest inherited condition of any major racial group in the UK today.
This project has shown that it is possible to provide sufficient and accurate information to the individual in order that they take up the opportunity of asking to be screened. The public’s response to the project has been remarkably positive and awareness has increased fourfold. The work is far from over, as we need to see 100% awareness and more uptake of screening.

It is now possible to mention the name thalassaemia to Asians in the UK without inviting the quizzical looks that one obtained four years ago, which be it a small is still a significant measure of this Project’s success. I have been most happy to be associated with the charity’s work and look forward to further developments in this area of valuable work.

Yours sincerely,
Nina Wadia

Read all about the Asian Awareness campaign.


Some leaflets to be used in schools and colleges: