Our Latest News
Monday October 2, 2023
Check out our October report to learn more about our community-led Rare Disease Research Network, as well as new details on our Neurofibromatosis Type 1, Pitt Hopkins syndrome, and Idiopathic Hypersomnia projects! Read here, and sign up to our mailing list here!
Friday August 18, 2023
Do you identify with the rare disease community? Are you interested in health research? Share your thoughts by completing our anonymous online survey (click here)! Your ideas will help shape our new rare disease research network. The link will be open until 17 September.
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 […]
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. […]
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!