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Rare patient passport trial CamRARE 2023

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-centred research opportunities. It is being 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?”

Allison Watson

CEO, Ring 20 Research and Support CIO

WHAT HAVE WE BEEN UP TO?

Building an online platform to facilitate rare disease research.

 

Developed with the community, for the community.

Our project is led and developed by the rare disease community. Since our project commenced in October 2023, we have recruited 21 members for our community working group, including people with lived experience of rare diseases, their families and caregivers, rare disease advocates and patient group representatives.

Our community working group meets monthly to shape the project. They are developing an online platform to facilitate rare disease research and will launch it in November 2024.

We are not admitting new members to our working group. However, you can learn more about their work by signing up to our mailing list below.

We also have a range of other opportunities to get involved in the project and warmly welcome interested parties from various backgrounds, like patients, patient organisations, research funders, researchers, clinicians, and industry (read more below).

Image shows our RDRN Community Working Group members collaborating around tables in a conference room, viewing a presentation about PPI

GET INVOLVED

 

Rare disease community members, we need YOU.

 

RDRN values the opinions and experiences of everyone, representing their community’s voice.

There will be various roles and opportunities for community members to be involved, such as community outreach support, testing the new online platform, or consulting on specialist topics like marketing and communications or finance and funding. The work mustn’t overburden community members who already do so much to support the Rare Disease Community; you’ll be paid for time and expenses.

Image is a watercolour animated image of 6 diverse individuals sat around a table sharing their ideas. All are wearing the RDRN blue and gold colours

A watercolour animated image of six diverse individuals sharing their ideas around a table. All are wearing the RDRN blue and gold colours.

 

We warmly welcome partnerships from community members, researchers, funders, and industry. 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 fulfils its aims and provides meaningful value to the community?

Be an enabler

Do you have practical skills, resources, lived experience, or a research interest that you can bring to this project?

Be a facilitator

Are you a researcher, research funder, pharmaceutical partner, biotechnology organisation, or someone who could help us deliver patient-led rare disease research?

Be a participant

Would you like to join the network once the platform is up and running?

GET IN TOUCH, AND JOIN OUR MAILING LIST

Once our platform is up and running, we will invite everyone on our mailing list to join the new Rare Disease Research Network.

Subscribe to the Rare Disease Research Network

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