Participants wanted – Exploring support needs of young people with CAH
Researchers from the Centre for Appearance Research (CAR) at the University of the West of England (UWE), Bristol are working on a project to better understand the support needs of young people with a difference in sex development (dsd) and develop support based on this research.
They would like to include the voices of people with lived experience as much as possible in the design and implementation of the research and so are currently looking for young people with a dsd (aged 16-25 years) as well as parents of individuals with dsds to take part as User Representatives. This is a paid opportunity and would involve completing anonymous online surveys and taking part in online meetings with other User Representatives (separate meetings for parents and young people). These will focus on understanding peoples’ experiences, what kind of support is missing and needed for young people with dsds, and how we should approach the main part of our research (e.g., what questions to ask, where to find participants).
There will be opportunities throughout the process to talk without the researchers present as well as provide anonymous feedback and suggestions – this is to help make sure User Representatives’ voices are heard and the project is going in the direction they feel is right. The meetings will be flexible to respect school, work, and social commitments, and would be a time commitment of no more than 5 hours total.
The researchers are prioritising creating a space where everyone feels comfortable to provide honest input and feedback and welcome any young people or parents who are interested in the project.
See the flier below, which includes contact details of the researchers if you’re interested in taking part.
REMINDER: The Living with CAH Support Group and UWE Bristol are not the same organisation. Please take this into consideration. We (the Living with CAH Support Group) are not responsible for anything that you share with UWE Bristol. See Section 10 of our Privacy Policy here.
Recent Blog Posts
A selection of articles from around the world in 2025
Here’s a selection of three articles from around the world in 2025 about CAH. They cover treatment methods and long term outcomes for people with CAH - making for interesting reading for anyone interested in or affected by CAH. These articles are not a recommendation...
COVID-19 Information & Guidance
As new guidance and information becomes available, we will do our best to link to it below - please check here for updates. If you contract COVID-19, remember to adhere to sick-day rules. Always seek guidance from your GP, endocrinologist or other appropriate medical...
Annual General Meeting – 2nd November, 3pm UK time in Oxford
The CAH Support Group is pleased to announce its 7th Annual General Meeting (AGM). It will be held in person at The Lighthouse, Oxford on Sunday 2nd November 2025 at 3pm UK time. A virtual Teams link is available on request. If you'd like to see the agenda and/or...