PNH National Services

National Community Survey in Partnership with the bone Marrow Alliance

The PNH Support Group and Aplastic anaemia Trust are currently running the first ever National Community Survey of people living in the UK with bone marrow conditions or caring for those with rare bone marrow conditions.

 The National Community Survey aims to engage as many people as possible across the UK who are affected by a range of rare bone marrow failures. The survey will build an evidence base, rich in both data and stories, to help inform the future activities of the groups involved and facilitate awareness raising. 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 are living with a bone marrow condition, or you are a parent/child/carer/family member of someone living with a bone marrow condition, we ask you to please take part in this research.

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

 You can access the survey here: 

Survey link


November 25th, 2022 by Jacqueline Linn