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Patient Led Research Hub

Our Latest News

PLRH quarterly: July

Tuesday July 21, 2026

Check out our latest newsletter and learn about our latest major funding milestones for Pitt Hopkins UK and Rett UK, Hypersomnolence UK, and Children’s Hyperinsulinism Charity! We’re delighted to have supported each of these patient-led multi-stakeholder teams edge closer to launching their research projects. We also report on 3 major events we’ve attended over the […]

funding success for PTHS & Rett UK!

Thursday July 9, 2026

Led by Prof Shaila Afroj, Pitt Hopkins UK and Rett UK, we are delighted to have contributed to a successful application to the University of Exeter’s EPSRC Impact Acceleration Account, Translational Funding. The project aims to develop a wearable bodysuit which can monitor breathing and cardiac metrics in real-time. The device will be designed with […]

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 […]