A patient-driven rare disease research network for all

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Together we revolutionise rare disease research

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OUR AIM

Turning research on its head! We’re building teams with patient communities as equal partners alongside researchers, healthcare professionals, and industry representatives. Through our inclusive, community-driven, cross-sector platform, we aim to de-risk patient-driven and co-produced research.

HOW WE DO IT

We’re a networking hub for everyone! We help patient communities navigate their research journey, supporting them from the early stages of priority setting through to funding application and dissemination. We showcase ideas and match-make multi-stakeholder teams, connecting members with shared objectives to co-produce new rare disease research.

229
platform members
51
connections made
10
live research questions

“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

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