Public & Patient Involvement (PPI) Panel
The Heart of the Network:
PPI Partners
Public and Patient Involvement (PPI) is at the centre of our network to ensure that:
- Lived experience directly influences all our efforts
- Our work is inclusive and relevant to real-world needs
- We can address critical gaps in understanding and support
Why we do it:
A partner perspective
Wiktoria Kaminska’s personal journey with Alström Syndrome, spanning decades, highlights the critical role of research in understanding rare conditions and the transformative power of connecting with others who share similar challenges.
“Blindness happens when you’re young, but hearing declines as an adult, and I wanted to understand how others manage this. Doctors can help, but without research, I didn’t know what to expect. Then, in 2020, my hearing declined suddenly. Only last year, I found two people with the same condition. Connecting with them was a huge relief. It made me feel like I wasn’t alone anymore.”
Guided By You
Our work is shaped by the people it affects most. A dedicated PPI Liaison coordinates this effort, making sure your priorities are our priorities.
Patient-Led Decisions: Our patient panel actively shapes our work, from research priorities to funding decisions.
Share Your Insight: Through workshops and committees, we provide platforms for patients, caregivers, and advocates to share their expertise.
Stay Connected: We keep the conversation going on social media and in the PPI Bulletin, a recurring email with research opportunities, ensuring you’re always informed and involved.
A Nationwide Network: Our partnership with Health Research Charities Ireland (HRCI) connects us to the experience of over 2 million people, strengthening our impact across Ireland.
Paradigm shift: what this means for rare disease research
- Outcomes are not only scientifically relevant, but can have profound impact on the lives of patients, caregivers, and families.
- Our work prioritises inclusivity, communication, and collaboration.
- Rare diseases are better understood, more effectively treated, and no one navigates their journey alone.
“Together, we are creating a path towards improved health outcomes and enhanced quality of life for people living with rare diseases across Ireland.” Dr Cassy Dinius, RDCTN PPI Liaison Officer
To learn more about getting involved with the RDCTN PPI Panel, click here.
Network Partners
