Info for Patients

Information for Patients:

TIF Thalassaemia Patients Connect

The Thalassaemia Patients Connect project, launched by the Thalassaemia International Federation (TIF), provides a shared communication space, giving individual patients and patient associations worldwide the opportunity to interact, ask for and share information with each other regarding thalassaemia. 

Scientists discover way to produce unlimited blood supply

New method to produce blood in a laboratory is more costly but could aid in shortages of rare blood types.

Teenager's sickle cell reversed with world-first therapy

BBC News, March 2017: A French teenager's sickle cell disease has been reversed using a pioneering treatment to change his DNA. The world-first procedure at Necker Children's Hospital in Paris offers hope to millions of people with the blood disorder.

Malaria: Its Lifecycle and why malaria will still remain with us

The following presentations are of immense interest, as it is postulated by medical scientists, that the origins of haemoglobinopathies like thalassaemia and sickle cell anaemia, are genetic adaptions to provide some sort of biological defensive mechanism against the deadliness of malaria. In a number of countries affected by malaria, it is quite common to find that the majority of survivors are carriers of a haemoglobinopathy.

Living with Thalassaemia

Living with Thalssaemia can be challenging but several lifestyle and treament approaches can help people cope.

Sickle Cell Disease: A booklet for parents, patients and the community

This booklet is available online to download in English and German

Iron Warriors

Find information to help you stay strong, fit and keep doing the things you love. Available in English and Indonesian.

Iron: Is too much harmful?

Chronic iron overload occurs when the body’s limited iron storage capacities are exceeded. Because there is no natural mechanism to remove excess iron from the body, iron builds up – first in the liver, then in hormonal organs like the thyroid and pituitary glands, and eventually in the heart. The major cause of chronic iron overload is regular blood transfusions. Iron Overload Infographic

What to Expect when you go for an MRI for heart or liver iron

An American publication about Magnetic Resonance Imagaing (MRI) for assessing amounts of iron in our organs.

 

Related Pages:  Patient Support  -  Personal Stories   -   Resources

Go to top