Read through our July newsletter for updates on two upcoming proposals, and our community-led Rare Disease Research Network (RDRN). We’re looking for help reviewing the RDRN website, so please do get in touch if you’re interested!
Check out our April newsletter for updates on our community-led Rare Disease Research Network!
Welcome 2024! Check out our January newsletter for a look back at our PLRH portfolio and a quick update on our new, community-led Rare Disease Research Network. Read here, and sign up to our mailing list here!
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!
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.
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 […]