Thalassaemia & Rare Inherited Anaemias

The NE & Y HCC is a network for SCD only. The hospitals and clinical teams are part of the North England Thalassaemia & RIA HCC – North of England Haemoglobinopathy Coordinating Centre

What is Thalassaemia?

Thalassaemia is a genetic blood disorders affecting the production of haemoglobin. People with thalassaemia produce either no or too little haemoglobin. Haemoglobin is an iron-rich protein in red blood cells that carries oxygen to all parts of the body.

Thalassaemia is inherited from parents, it is not contagious, or a virus acquired from blood transfusions. It is passed on equally by men and women.

The main health conditions associated with thalassaemia are:

Anaemia – severe tiredness, weakness, shortness of breath , pounding, fluttering or irregular heartbeats (palpitations ) and pale skin caused by the lack of haemoglobin
Too much iron in the body – this is caused by the regular blood transfusions used to treat anaemia and can cause problems with the heart, liver and hormone levels if untreated

Some people may also have delayed growth, weak and fragile bones (osteoporosis ), and reduced fertility .

To find out more about thalassaemia click here

UK Thalassaemia Society (UKTS) is a thalassaemia patient support and advocacy group – to find out more click here

What are Rare Inherited Anaemias?

Rare Inherited Anaemias (RIA) are rare genetic blood disorders. Examples of RIAs are as follows:

Diamond-Blackfan Anaemia – a rare blood condition where the bone marrow fails to produce enough red blood cells.
Congenital Dyserythropoietic Anaemia – an inherited blood disorder that affects the development of red blood cells.
Congenital sideroblastic Anaemia – an uncommon, diverse class of inherited hematopoietic disorders. In which the bone marrow fails to produce a sufficient number of healthy red blood cells.
Red cell Membrane disorders
• Red Cell Enzyme disorders
• Transfusion-dependent unexplained inherited anaemias

As these types of anaemias are rare, research into the conditions continue. To find out more about RIA click here

Our team of experts is dedicated to delivering personalised care and support. We’re here to answer your questions, provide guidance, and help you live well with thalassaemia. Please reach out to us for more information or to schedule an appointment.