Over the summer we're undertaking research to better understand how haemochromatosis affects our quality of life.

We're starting this month with a survey on our general quality of life, followed by a second survey looking at GH specifically.

This survey will help us better understand and advocate for the needs of people with GH. We're hoping to publish the results in the Autumn!

You can help, by completing this survey.

Complete the survey

Next steps...

This survey follows an internationally adopted format, developed by the World Health Organisation. The questions have been devised to be cross cultural and applicable to a range of conditions, not just GH. This is the first of two surveys. This one will be used to compare QoL to a matched cohort of people without GH to see if people with GH have materially better or worse quality of life than others. The second survey is shorter and focusses specifically on aspects of GH lived experience, to augment the findings from the first survey. We will be sending out a link to the second survey in a few days’ time. But for people who complete the first survey and provide an email address, the second survey is emailed out automatically.

Meet the Researcher

This research is being undertaken by Leah Craven-Smith, who is an integrated master’s student of pharmacology at the University of Leeds.

Over the summer, Leah is undertaking a health data research internship with Haemochromatosis UK, in association with the 10k Able Interns Programme, as part of our commitment to supporting early career stage researchers, especially those with a disability or genetic condition.