We are committed to transforming outcomes for people living with thalassemia and other iron-loading anemias.

To support better understanding of the condition, we have developed a short ‘eBook’ that you can find here. It provides an introduction to some of the key topics relating to thalassemia, including what causes it, how it is diagnosed and current treatment options. It also describes the impact thalassemia can have on everyday life and provides practical tips on how to manage the condition effectively.

Unmet Medical Need

“Hepcidin is to iron like insulin is to glucose. Just like people who have diabetes can suffer from lack of insulin, people who have too much iron in the body don’t make enough hepcidin.” - Professor Tomas Ganz, MD, PhD

Professor Tomas Ganz, MD, PhD, David Geffen School of Medicine, UCLA, discusses his discovery of hepcidin as the body’s master regulator of iron and its therapeutic potential across a range of hematological conditions.

Letter to My Younger Self

“'Don’t let your illness stop you’ is the advice I wish I had been told when I was younger.” - Zehra

As thalassemia is typically diagnosed in early childhood, it can be tough for children with thalassemia and their parents to imagine what their future will look like. In collaboration with the UK Thalassaemia Society (UKTS), we’re proud to have launched ‘Letter to My Younger Self’. The campaign showcases the personal achievements of real people living with thalassemia to inspire young people with the condition and show that it is not a barrier to happiness and success.

In this video, Trustee of the UKTS, Zehra, shares her journey of living with thalassemia while providing some crucial advice for those going through a similar journey—don’t let your illness stop you.

“Coming to terms with it is a long journey, but one that I am thankful for in the end.” - Jon

Jon, a Trustee of the UKTS, describes how he has been managing his thalassemia. While the challenges faced can be significant, they shouldn’t stop one seeking happiness and worry about ‘missing the mark’ once in a while.

“Use your courage to speak to others – you’ll discover things about the condition that you wouldn’t find out otherwise.” - Ashkaan

With Ashkaan, Trustee of the UKTS, we explore his courage of managing thalassemia by himself, along with the importance of finding a community to engage with.

“Use your courage to speak to others – you’ll discover things about the condition that you wouldn’t find out otherwise.” - Ashkaan

Watch Ravi, who lives with thalassemia and is a Trustee of the UKTS, as he shares his story of living with the condition, the feeling of being different, and how he’s overcome his challenges to get where he is now.


Patient resources

The Thalassaemia International Federation (TIF) has a wealth of resources and provides links to local organizations around the world, to help you find support in your own country: https://thalassaemia.org.cy/who-we-are/tif/membership/tif-members/.

The UK Thalassaemia Society (UKTS) also has a broad range of English language resources to support people living with thalassemia of all ages.