RDRN
Rare Disease Research Network (RDRN) is an open-access collaborative platform facilitating patient-driven and co-produced research. We welcome anyone interested in rare disease research!
Co-created by PLRH, CamRARE, and over 30 adults with lived experience of rare diseases, it aims to:
- Develop & showcase lived experience research ideas
- Validate investigator-led research ideas
- De-risk patient-driven research
- Collaborate with investigator-led platforms & public involvement initiatives
RDRN launched in November 2024 and has received positive feedback from patient and professional groups across the globe. Originally funded through an National Institute for Health and Care Research (NIHR) 2023 Programme Development ‘Public Partnership’ Grant, we now look forward to securing funding to help patient groups get ‘research ready’, and offer an investigator-led co-production brokering service.