Use your personal experience of a rare condition and make a difference!

If you’re someone who has personal experience of a rare condition, your experiences and perspectives can make a real difference to research and healthcare services in rare conditions. It’s only through your experiences that researchers and healthcare professionals will know what works, what needs improving and most importantly, what are the priorities for people with rare conditions.

The Manchester Rare Conditions Centre and Manchester Biomedical Research Centre are working to improve the future diagnosis, treatment and research of rare conditions and they can only do this by working in partnership with you.

They’ve created a brand new Steering Group, called ‘We R Rare’ and are looking for 12 patients, carers and family members with direct experience of rare conditions across Manchester and North West England to join!

Meeting every two months, members will 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.

By joining the We R Rare Group, you’ll also, meet other people affected by rare conditions, find out more about the latest developments in rare conditions and, of course, be offered £25 an hour to acknowledge and appreciate the time and expertise you’re sharing with them.

Interested in getting involved? Find out more by visiting their website ( and send in your expression of interest by 5.00pm on Sunday 11th February 2024.