Do you want to influence the development of research in Phenylketonuria?

When developing research, it is important to understand the needs of those living with Phenylketonuria (PKU) to ensure that the research is in their best interests and improves the lives of those with PKU. For this reason we want to invite people with PKU, who are currently under the care of the Adult Inherited Metabolic team at Guy’s and St Thomas’, to act as advisors to our research.

What would this mean?

You would be working with other people with PKU and researchers to advise on PKU research studies taking place at Guy’s and St Thomas’. The initial discussions will focus on developing a research project looking at protein needs in adults with PKU.

You do not need any previous experience, just a willingness to attend meetings and to give your perspective as someone living with PKU. We would like to have our first meeting early 2021. This will be held either at lunchtime or early evening via video call, so no travel is required.

If you are interested in finding out more, please contact Sarah Firman on telephone: 020 7188 9611 or via email gst-tr.adultimddietitians@nhs.net.