We R Rare

Did you know that rare conditions affect more than 3.5 million people across the UK? Or that two-thirds of rare conditions can cause chronic disability? What about the fact that most rare conditions do not yet have a treatment? We’re working to change that and improve the lives of people with rare conditions, of all ages.

To make this change a reality, we need to work in partnership with people who have personal experience of a rare condition – whether they have a rare condition themselves or a carer or family member. Their unique insights and perspectives will help us to ensure the work that we do is relevant, acceptable and meets the needs of people with rare conditions.

In collaboration with the Manchester Biomedical Research Centre and Vocal, we launched the new ‘We R Rare Patient, Carer and Family Steering Group’ in February 2024 – our first meeting coincided with Rare Disease Day 2024!

The Steering Group is made up of 11 patients, carers and family members with direct experience of rare conditions across Manchester and North West England. Members 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.