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Patient Led Research Hub

new opportunity: community-led rare disease research network

We are thrilled to finally launch our project aiming to build a new, community-led rare disease research network! We’ve partnered up with CamRARE and are now asking for people within the rare disease community (people living with a rare condition, families, carers, patient representatives, advocates….) to get in touch if they’re interested. We’re hoping community members will form:

  • 2 working groups (each with about 10 people) to lead on this project
  • a consultation team, providing insight and feedback to working group activities

We’ll also be running regular outreach activities to ensure everyone will have a say if they wish. If you’re a member of the rare disease community and interested in any of these roles please complete our online Expression of Interest form. It will probably take you about 10 minutes to complete, but you can leave and come back to it if you wish. If you want to learn more first, you can review these slides; or, get in touch ([email protected])! We can’t wait to work with you!