We're running the first ever National Community Survey of people living in the UK with rare bone marrow conditions, or caring for those with bone marrow conditions.

This survey aims to engage as many people as possible across the UK who are affected by a range of rare bone marrow failures. Through this survey, we hope to improve understanding of patient and carer journeys and lived experience, identify concerns and gaps in existing support, and measure quality of life and the impact of living with a rare bone marrow failure.

If you have aplastic anaemia, or a related bone marrow condition, or you are a friend or family member of someone living with aplastic anaemia, we ask you to please take part in this survey:

Take the survey

The survey should take around 15 minutes to complete depending upon your answers.

We want to hear from everyone - so please do share the link with your family and friends, or anyone else you know who may be living with one of these conditions:

We're running this survey in collaboration with six other small charities supporting people with rare bone marrow conditions:

With special thanks...

We are able to conduct this survey thanks to funding from our sponsors, Alexion Astra Zeneca Rare Disease, Roche, and Sobi.


The survey is being conducted independently of our sponsors who do not have access to individual survey responses or personal data.

We would also like to say a special thanks to the volunteers from our community who helped us to design the questions in this survey.

You are brilliant.