RARE DISEASE RESEARCH NETWORK (RDRN)
Turning Research on its Head
The Project
The Rare Disease Research Network is a partnership project between CamRARE and the Patient Led Research Hub, funded by the National Institute for Health and Social Care Research (NIHR) and sponsored by Cambridge University Hospitals NHS Foundation Trust.
The project aims to support the rare disease community in building an online network of partnerships and resources to facilitate new patient-driven research opportunities. It has been co-produced by members of the rare community, with wider engagement supported through additional outreach.
This new online network will allow more rare diseases (and the patient groups supporting their communities) to be seen and heard in the research space, creating a more equitable field for all. This model turns the current approach to identifying new research opportunities on its head. The potential to open up collaboration between researchers, the biopharma industry and patient groups is huge…who knows where this may lead?”
HOW HAS THE PROJECT EVOLVED?
Building an online platform to facilitate patient-driven rare disease research.
Developed with the community, for the community.
This project was led and developed by the rare disease community. Since the project commenced in October 2023, we recruited almost 30 members to our community working group, including people with lived experience of rare diseases, their families and caregivers, rare disease advocates and patient group representatives.
This community working group met monthly to shape the project and together we have developed an online platform to give rare disease patient ideas and priorities for resreach a place to be seen, where all stakeholders with an interest in rare disease reserach can network and collaborate to take these ideas forward. The platform launched in November 2024 at RAREfest24 and is now live with over 200 members, many connections being made and over 10 great patient inititiated researchch ideas being showcased.
Head there to review the resources to support patients in their research journey and to meet others with similar research interests. Join to connect with others and get access to the research ideas..
