Date and Time: Thursday 27th November from 6.00 – 8.00pm
Location: Online over Zoom
Aims of the meeting:
The current Manchester BRC funding runs until 2028, and a new funding call is now open to define the research themes for the next phase of the BRC. We hope that the Rare Conditions (RC) Theme will continue to be supported in this next round, so proposals need to be developed now. We want these plans to be co-developed with patients and families, ensuring your experiences and priorities directly shape the future direction of rare conditions research in Manchester. This first meeting will introduce the current BRC and Rare Conditions research and begin gathering your ideas to guide the priorities, focus, and approach for the next phase.
How were the We R Rare Steering Group involved?
The We R Rare Steering Group have helped shape the next Manchester BRC Rare Conditions Theme proposal by sharing their thoughts, ideas and insights on:
- Research priorities: which challenges (diagnosis, daily impact, treatment development, etc.) are most important to focus on.
- Patient involvement: how patients and families would like to be involved in shaping research design, recruitment, and communication.
- Next steps: how feedback will inform the next stage of planning and how patients can connect with specific research projects in future meetings.
How have the We R Rare Steering Group made a difference to this work?
We R Rare members involved in the discussions, told us that “the information on the Centres and research was really interesting and informative”. They also shaped the proposal plans by emphasising the need for “more specific examples of projects” and the inclusion of truly patient-led projects.
More details:
We R Rare Steering Group is managed and supported by Vocal to shape the work of the Manchester Rare Conditions Centre and the NIHR Manchester Biomedical Research Centre.
Host: Sinduja Manohar – Sinduja.Manohar@mft.nhs.uk