We 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 including PNH.
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: https://bit.ly/3geB3ls
Co-creation has been an integral pillar of the development of this survey. We have worked alongside a Steering Group made up of the seven representatives of the Together for Healthy Marrow Alliance, as well as a Community Panel, to develop a survey that we hope resonates with the experiences of those living with bone marrow conditions. The seven groups are:
- The Aplastic Anaemia Trust (AAT)
- Congenital Anaemia Network (CAN)
- Diamond Blackfan Anaemia (DBA) UK
- Dyskeratosis Congenita (DC) Action
- Fanconi Hope
- PNH Support
- Shwachman Diamond Syndrome SDS UK
This survey is being conducted on behalf of The Aplastic Anaemia Trust, PNH Support, DBA UK, DC Action, Congenital Anaemia Network, SDS UK, and Fanconi Hope, with support from M+F Health and Absolute Market Research.
We are able to conduct this survey thanks to sponsorship funding from Alexion Astra Zeneca Rare Disease, Roche, and Sobi. The survey is conducted independently of our sponsors who do not have access to individual survey responses or personal data, but will have access to collated, anonymised data. Sponsors have had the opportunity to make suggestions to the project steering group, but do not have control over the design or content of the survey.