Closing date: 16th September  

The National Community Survey Steering Group launched has a call for evidence to inform the first ever National Community Survey of people affected by rare bone marrow failures in the UK.  The call for evidence, which is open for the next month, would like to gather any relevant information, studies, or existing surveys that have been conducted focussing on rare bone marrow failures.  

About the National Community Survey

The National Community Survey will engage as many people as possible across the UK who are affected by a range of rare bone marrow failures. The survey aims to radically improve understanding of patient 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.

This project is being organised and led by the National Community Survey Steering Group, made up of seven UK based groups:

  • 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
About the call for evidence

As part of the evidence, we are interested in any information relating to the conditions covered by the groups listed above which could help inform the development of the National Community Survey. This could include:

  • Aplastic anaemia, congenital anaemia, Diamond Blackfan anaemia & fanconi anaemia  
  • Dyskeratosis Congenita
  • Paroxysmal Nocturnal Haemoglobinuria
  • Shwachman Diamond Syndrome

The type of information being collected includes patient, healthcare professional or public surveys/ questionnaires (past or present), any relevant literature (reviews or scientific papers), local/national guidelines and or anything else you think is useful or relevant. If you are not sure if the information you have is relevant, please share anyway as it still may be valuable background information.  

How to submit information

Evidence submitted will be reviewed by members of the National Community Survey Steering Group (NCSSG) – a group of representatives from across the Alliance who are leading this project. The evidence gathered will help us to ensure the survey is adding to, and not duplicating, existing research.  

Please contact the team at: [email protected] by the 16th September with your documents / files. If you have any questions please do not hesitate to contact us.  

Thank you for your support of the National Community Survey

With thanks to

This project is sponsored by Alexion, Astra Zeneca Rare Disease, and Sobi. 





The survey will be conducted independently of our sponsors who do not have access to individual survey responses or personal data. Sponsors have the opportunity to make suggestions to the project steering group, but do not have control over the design or content of the survey.