Our Latest News

new opportunity: community-led rare disease research network

Monday July 24, 2023

We are thrilled to finally launch our project aiming to build a new, community-led rare disease research network! We’ve partnered up with CamRARE and are now asking for people within the rare disease community (people living with a rare condition, families, carers, patient representatives, advocates….) to get in touch if they’re interested. We’re hoping community […]

PLRH quarterly: July

Wednesday July 5, 2023

Learn more about our new CamRARE partnership, perhaps apply for one of our new Public Involvement roles, and get a quick update on two of our patient-led proposals! Lots of great stuff happening this year! Read it here. Sign up to our mailing list here.

NIHR Public Partnership funding success!

Wednesday April 5, 2023

We are very excited to finally be able to share our NIHR Public Partnership news! In December 2022 we submitted an application with CamRARE (Cambridge Rare Disease Network) to work with the rare disease community (people living with a condition, their families and carers, patient representatives, advocates) to create a new rare disease research network. […]

PLRH quarterly: January

Tuesday January 10, 2023

Happy 2023! May it be a happy, healthy year for you and yours. We’ve done a quick roundup of 2022 in our latest newsletter – have a read here. We’ve got so many exciting things in store for 2023 – consider signing up to our mailing list here to keep up to date!

It’s all about RARE!

Friday October 14, 2022

We’re delighted to announce our shift in focus to rare disease! Many people living with a rare disease and their families struggle with significant unmet medical needs, and few have the opportunity to be involved in research. Given that over 70% of our feasible proposals have come from small rare disease groups, we’ve decided to […]

PLRH quarterly: October

Tuesday October 11, 2022

Time for us to announce our shift to rare disease! Over 70% of our proposals come from small rare disease patient groups or charities, so we’ve decided to focus on this under-served community. We look forward to working with the Cambridge Rare Disease Network, Beacon for Rare Diseases, and many others to learn how we […]