Help shape the future for people with rare conditions

Rare conditions affect more than 3.5 million people across the UK. As part of their work to change that and improve the lives of those affected, the Manchester Rare Conditions Centre (MRCC) are currently recruiting people with lived experience of rare conditions to join their steering group.

Working closely with the NIHR Manchester Biomedical Research Centre, the MRCC host the ‘We R Rare patient, carer and family steering group‘, which brings together people affected by rare conditions from across Manchester and the North West to use their insight to drive change.

What does the group do?

Members of ‘We R Rare’ use their experiences of rare conditions to:

• Shape the research, services, and support available to people living with rare conditions.
• Provide strategic advice to the Manchester Rare Conditions Centre and the Manchester Biomedical Research Centre.
• Influence the latest research projects for discovering, studying, and treating rare conditions.
• Raise awareness of rare conditions and the challenges faced by those living with them.

What is involved?

Members of ‘We R Rare’:

• meet every two months
• are offered payment in recognition for their time and expertise and have (in-person and online) expenses covered
• are provided with individual support to enable them to get involved.

If you are interested in getting involved, simply complete the expression of interest form by Sunday 28th September 2025

“This is a great opportunity for our community to use their voice to ensure that PANS and PANDAS are included in the important conversation about rare conditions.”

– Katy Hindson, Health Lead, PANS PANDAS UK.