RDRN
Rare Disease Research Network (RDRN) is CamRARE’s inclusive, open-access platform, facilitating patient-driven and co-produced research. The PLRH is proud to have contributed to RDRN’s initial development, co-creating the network with CamRARE and over 30 adults with lived experience of rare diseases in 2023. RDRN launched November 2024 at RAREfest and welcomes anyone interested in supporting patient-driven rare disease research. Originally funded through an National Institute for Health and Care Research (NIHR) 2023 Programme Development ‘Public Partnership’ Grant, the network now forms part of CamRARE’s research pillar.
Visit rd-rn.org and join over 300 members from around the globe!
- Community-focused guidelines, templates and case studies to help you along your own research journey
- Connect with like-minded members to develop research ideas together
- Access mentorship to navigate one-off challenges or longer-term support
- Share your own research experiences and skills to help others with their research journey
- Advertise your research idea in the Members Area
- Work with RDRN advisors and be matched with student interns or the PLRH to kick-start your own study
- Search a repository of helpful links to find other patient-centred, rare disease, or co-production organisations