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Patient and public partners

image depicting rare disease PPI invite - general
Sharing expertise
Your rare disease needs more awareness when people & doctors say, "What"?

When we help each other out and share expertise, we make real progress moving forwards Stronger Together. Our rare disease team welcome conversations for new research ideas or contributing to current research at any stage. We have a local Rare Disease Patient and Public Involvement Committee who help us consider new research ideas, develop research and co-produce research outcomes. Expressions of interest to join this panel are always welcome - we need members with diverse experiences to help ensure we're performing the best research possible in the most efficient / effective / practical manner. Due to COVID-19, we have not refreshed our core PPI committee from 2020 and do not plan to re-engage until the pandemic is less concerning for many of our very vulnerable members.

At Queen’s University Belfast, we very much value our rare disease community’s input to our Rare Disease Research; please do not hesitate to get in touch with us if you are potentially interested in taking part in our Patient/Personal and Public Involvement (PPI) Committee. The purpose of the group is to maintain an active partnership between patients living with a rare disease(s) and/or members of the public and researchers.  

If you are interested in being part of this committee or just being kept up to date with research developments, please contact us ( or simply fill in the form below.  By contacting us or giving your details you are under no obligation to take part in the PPI committee.

Many thanks 

Rare Disease Research Team (QUB)