We R Rare Patient, Carer and Family Steering Group

In collaboration with the NIHR 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 18 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 NIHR 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 have the We R Rare Patient, Carer and Family Steering Group been involved in?

Since their launch in February 2024, they have already influenced and shaped many different areas of work.

For example, they’ve:

Supported the development of the MRCC Strategy and helped us explore what a Rare Conditions Theme in the NIHR Manchester Biomedical Research Centre could look like in the future
Provided insights to support multiple research studies gain ethical approval
Shaped a new project that is developing patient reported outcome measures in rare conditions
Influenced the development of tailored resources for a new health service
Brought our work to life by engaging the wider rare condition community with their personal stories and experiences

These are just a few examples but it’s not just about getting them involved in work that we think is important…it’s about developing joint priorities. As advocates, they will continue to ensure the work we do is built to meet the needs of people affected by rare conditions. Current initiatives are as follows:

Online patient forums for those affected by rare lower urinary tract conditions

How the We R Rare Steering Group are making a difference

In collaboration with We R Rare Steering Group members, Vocal have created a ‘You said, we did’ template that everyone who discusses their own project with the group must complete. It’s vital that the Steering Group members are clear on how their insights have shaped work into rare conditions and made a difference.

Read through the ‘You said, we did’ overview which explores the impact the Steering Group has had in developed tailored information for the ‘Fetal Exposure to Medicines Services Pilot’.

Watch this space for more updates coming soon! If you have any questions or would like further information about getting involved, please get in touch with Sinduja (sinduja.manohar@mft.nhs.uk) and she’d be happy to help!