Interested in becoming a PPI Partner?
How can I get involved?
What is important is your lived experience, only you know what it is like to be you. You are the expert, and your insights are vital.
It is up to you what you take part in and what you don’t.
Here are a few examples of the types of activities we partner on:
- Read parts of an application a researcher has written and provide your opinion and feedback on it
- PPI Partners sit on the management committee and other panels, where they make decisions that influence the direction of the network
- Going to conferences, talking at events, working with us to change our research process
- Co-creating educational materials and/or workshops
Become a PPI Partner
Our mission at Rare Disease Clinical Trial Network is to ensure that the patient voice is at the heart of everything we do.
That includes having a team of PPI Partners 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.
To express your interest, click here or email rdctn@ucd.ie
Network Partners
