Get Involved
Have Your Say
Within the Rare Disease Clinical Trial Network our vision is to ensure that the patient voice is at the heart of everything that we do. We believe that will include having a team of PPI contributors working with us at different levels of commitment and duration over the lifetime of the network.
We understand that people have varying levels of demands on their time already. Our aim is to be as inclusive as possible so that we can hear many different perspectives of living with a rare condition.
Submit your interest by emailing us at cassandra.dinius@ucd.ie or contact 087 7059626 with a call, message or WhatsApp voice note.
What will I be asked to do?
Examples of the types of PPI activity we MIGHT ask you to contribute to include (but are not limited to):
- Working with research teams on specific projects/trials
- Being members of our network governance teams
- Collaborating on prioritisation activities/funding applications/strategy development
- Co-creating educational materials and/or workshops
- Joining our patient advisory group for a pre-defined term
To express an interest in getting involved or learn more about our PPI work please contact us.
Network Partners
