RARE DISEASE RESEARCH NETWORK (RDRN)
Turning Research on its Head
The Project
The Rare Disease Research Network is a partnership project between CamRARE and 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-centred research opportunities. We hope it will be co-produced by members of the rare community, with wider engagement supported through additional outreach.
The concept of this new online network would allow for more rare diseases (and the patient groups supporting their communities) to be seen and be 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, biopharma industry and patient groups is huge…who knows where this may lead?”
Are you a member of the rare disease community? Then you’re warmly invited to get involved
Developed with the community, for the community
It’s vital that the network reflects the diverse needs and interests of the rare disease community. The whole project will be led and developed by people living with a rare disease, their families and caregivers, patient representatives and advocates.
We’re recruiting 16 people with lived experience of rare diseases, their families and caregivers, rare disease advocates and patient group representatives to co-produce the new network with us and contribute to wider engagement through community outreach.
Rare disease community members. How CAN you be involved?
RDRN values the opinions and experiences of everyone representing their community’s voice. There will be various roles and opportunities to be involved such as working group members, community outreach support, and testing the new online platform. It is imperative the work doesn’t over-burden community members who already do so much to support the Rare Disease Community; you’ll be paid for time and expenses.
Register your interest here
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Could you…
Be a leader
Can you help co-chair the working group meetings; give the group direction and keep the project on track?
Be a contributor
Can you contribute your lived experience and represent the rare disease community to ensure their voice is heard?
Be a connector
Could you make introductions to people and organisations who will be able to help with skills, resources or funding?
Be a promoter
Will you help us spread the word and ensure this project is able to fulfill its aims and provide meaningful value to the community?
Be an enabler
Do you have practical skills, resources, lived experience or an interest in research that you can bring to this project?
How will it work, and who is involved?
