CAN

The charity for congenital anaemias

We are a group of patients, carers, doctors, and scientists who are all interested in patients with rare inherited anaemia.

Who We Are

  1. We want patients with rare inherited anaemias to be able to meet each other (virtually or in reality) and help and support each other. Find us on Facebook

  2. We want to give out reliable information about rare inherited anaemias and get your questions answered by doctors in the field. Ask us a question about one of these conditions on Facebook or by email, and we’ll answer it.

  3. We want to raise money to fund research so we can better understand these conditions and improve the diagnosis and treatments available. Help us fundraise – contact info@togetherwecan.uk.

Why you’re here

Have you or your child been diagnosed with a rare inherited anaemia? You can read more about:

Are you or your child receiving blood transfusions regularly but you have been told it has not been possible to make a diagnosis about the condition?

Are you worried you or your child might have a rare inherited anaemia but you have not had any tests yet from blood specialists?

Please contact us on info@togetherwecan.uk for help and advice.

What is Anaemia?

Anaemia is not having enough red blood cells. Red blood cells carry oxygen from the lungs to the rest of the body. Not enough red blood cells (anaemia) makes people feel tired, weak and short of breath.

There are dozens of causes of anaemia.

Some people worry that anaemia is like leukaemia. Leukaemia is a cancer of the white blood cells. Some patients with leukaemia do get anaemia. But if you are told you or your child has anaemia it does not mean they definitely have leukaemia.

Learn more >>

Inherited Anaemias

Inherited anaemias are ones which are carried in the genes and can be dominant (the mutated gene is carried in one parent and causes anaemia), recessive (each parent carries a mutated gene and only when they are found together in the child does the anaemia happen) or de novo (neither parent carries the mutation but it has arisen by chance in the developing fetus) These can either occur on their own or in the context of bone marrow failure.

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