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

Our Mission

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
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.
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:

Diamond-Blackfan Anaemia (DBA)
CDA
Sideroblastic anaemia (CSA)
Red cell membrane disorders (eg. Hereditary spherocytosis, hereditary elliptocytosis, pyropoikilocytosis)
Red cell enzyme disorders (eg. pyruvate kinase deficiency, G6PD deficiency)

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

Stories

CAN represented at haematology event

Emma Buysman, CAN supporter and parent of Lucas, who has Pyruvate Kinase Deficiency was invited to represent CAN at the British Society of Haematology Annual Scientific Meeting, a conference for those from the world of blood specialists and those who provide support.

CDA patients gather at first conference

Between 5 and 7 May while the rest of the country - not to say the world - was focused on the coronation of the new King, a small band of us gathered in a hotel in Leeds for what we believe is probably the world’s first CDA patient conference.

Lucas raises more than £2k for CAN

Lucas has Pyruvate Kinase Deficiency and this year in honour of Rare Disease Day, he not only raised an incredible £2,000 for our small charity by hosting a 'Star Blood' walk but he also raised awareness of rare diseases.

Meet Olabike

Year 12 student Tilly speaks with community pharmacist, Olabike, who has sickle cell disease (SCD) which means Olabike's red blood cells cannot carry as much oxygen and can cause blockages in small blood vessels, resulting in a sickle cell crisis.

Meet Robi

Robi was diagnosed with Congenital Dyserythropoietic Anaemia type 1 (CDA-1) as a young baby. People with CDA-1 make red blood cells more slowly than normal in the bone marrow and break them down faster than normal in the blood vessels.

Meet Tim

Tim’s parents found out that he had a genetic anaemia called pyruvate kinase deficiency (PKD) before he was born. PKD is an inherited condition resulting from two mutations in DNA that affect the pyruvate kinase enzyme in red blood cells.

Meet Yvette

Yvette is a painter, visual artist and textile designer who is based in London. She shares what life has been like growing up with Sickle Cell Disease and how she adapts her everyday living to manage this condition.

Information Leaflets

HbH information sheet

Read more about Haemaglobin H disease in our information sheet.

HPP information sheet

Read more about Hereditary Pyropoikilocytosis in our information sheet.

PKD information sheet

Read more about Pyruvate Kinase Deficiency in our information sheet.

Recipe for beguni (spiced aubergine)

This recipe was provided by CAN Board member, Resina.