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Patient Led Research Hub

Our Latest News

PLRH quarterly: April

Tuesday April 28, 2026

2026 is flying! Check out our latest newsletter to see what’s been keeping us busy: we’re working on 9 patient-led proposals and trying to keep up with many, many fantastic events. We’re also delighted to announce that the Rare Disease Research Network (RDRN) has now formally transitioned to CamRARE’s new research pillar. We look forward […]

RDRN transitions to CamRARE

Saturday February 28, 2026

In 2023 we joined CamRARE on a journey to co-create a new rare disease research platform, led and developed by the rare community. Supported by NIHR funding, we launched the Rare Disease Research Network (RDRN) the following November at RAREfest, and are now truly delighted that CamRARE has agreed to support the network as part […]

PLRH quarterly: January

Monday January 12, 2026

Happy 2026 everyone! We wish you a wonderful year ahead, and look forward to collaborating with many of you. Check out our latest newsletter for a recap of 2025 proposals, our 10 year anniversary, and an RDRN update! As always, you can sign up to our mailing list here.

New RDRN publication!

Tuesday November 4, 2025

With the final countdown to RDRN presentations at RAREsummit (join us: 06 November at the Wellcome Genome Campus!), we are delighted to share our recent peer-reviewed BMJ Open commentary. We outline the need for patient-driven research, challenges and benefits of co-production, and how RDRN fits within the already crowded UK PPI landscape. We’d love your […]

New NHS workforce publication!

Wednesday October 15, 2025

We are delighted to share a new peer-reviewed publication exploring the how NHS Hospital Trusts support staff living with fluctuating, often invisible, long-term health conditions. This important work focused on understanding organisational barriers and enablers, but findings were validated and further developed through workshops with affected staff. Dr Sara Booth – an NHS consultant living with […]

We’re 10!

Thursday October 2, 2025

The PLRH celebrates its 10 year anniversary! Check our out a recap in our latest newsletter, and listen to our Medical Director, Dr Rona Smith, speak to That’s TV Cambridge: PLRH Director, Dr Rona Smith, talks to That’s TV