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Patient Led Research Hub

Our Latest News

New NF1 publication!

Thursday August 28, 2025

We are delighted to share a new peer-reviewed publication exploring the healthcare experiences of NF1 families and healthcare providers. ‘Alone on our NF1 island’ was co-authored by Childhood Tumour Trust and Dr Shaowen Ju, and supported by the PLRH. The paper describes the unmet need for better care guidelines and NF1 education for both families […]

PLRH quarterly: July

Tuesday July 1, 2025

So far this year we’ve been focusing on developing RDRN, core grant applications, and planning future events. However, we’ve also seen an uptick in new research ideas – keep them coming!  Check out our latest newsletter for an update and sign up to our mailing list here.

Exploring Patient-Initiated Research

Thursday June 19, 2025

In 2024 we were contacted by the British Columbia Support for People and Patient-Oriented Research and Trials (BC SUPPORT) Unit – they were keen to understand how the PLRH supports patient-led research, as they aim to expand their own service. We were happy to be interviewed as part of their work to understand challenges and […]

PLRH quarterly: January

Thursday January 9, 2025

Happy 2025 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 2024 proposals and our newly launched Rare Disease Research Network! Sign up to our mailing list here.

RDRN to launch at RAREfest!

Thursday November 21, 2024

Join us at CamRARE’s RAREfest 22 & 23 November at the Guildhall in Cambridge, as we launch our new co-produced Rare Disease Research Network! We can’t wait to tell you all about it and welcome you on board!!

PLRH quarterly: October

Friday October 11, 2024

Have a look at our latest quarterly: join RDRN as an early adopter, learn about our latest proposals, and find out where to catch us at an event!