What is the Rare Voices report?

We’ve been working on this report for nearly a year! Ever since we asked all of you to complete our first ever National Community Survey, which is where all this information is from.

We collaborated with six other very small charities to conduct the survey and publish this report, which represents the responses from people with a range of rare conditions which affect the bone marrow.

The report has been funded thanks to sponsorship from Alexion AstraZeneca Rare Disease, Pfizer, Roche and Sobi, (who had no editorial control over its content) and has been produced in collaboration with six other charities representing people with similar or connected bone marrow related conditions. 

These findings help our charity to decide how best to support our community, and to campaign on the issues that you told us were most important.

What does the report say?

The report looks into:

  • The impact rare bone marrow conditions can have on mental health and well-being

  • The extent to which people living with or supporting someone with rare bone marrow conditions feel their care is satisfactory and joined-up

  • The advice and practical support available for people with rare bone marrow conditions, and where there may be gaps

  • The level of understanding and awareness of rare bone marrow conditions among healthcare professionals and the general public, and what impact this can have

  • The overall impact of living with a rare condition affecting the bone marrow


Campaigning for change

Together, our alliance of charities are making a series of recommendations, including equal access to joined-up care for all the conditions, an accessible benefits system that takes into account the complexities of rare conditions, more open accessible information about research, and more.


Get a copy of Rare Voices

You can read the whole report as an online PDF or order a free print copy on the Super Rare website by clicking on the button below. We’d love to hear what you think so please feel free to share your thoughts in the Facebook group or by replying to this email.



A special thank you to those of you who filled in the survey, took part in interviews, or sat on our Community Panel to help us to design the survey. 

The report was funded thanks to sponsorship from Alexion AstraZeneca Rare Disease, Pfizer, Roche and Sobi, and the survey was funded by sponsorship from Alexion AstraZeneca Rare Disease, Roche and Sobi. 

Alexion AstraZeneca Rare Disease, Pfizer, Roche and Sobi had no editorial control over the content of the report.