Public & Patient Involvement (PPI) Panel
The Rare Disease Clinical Trial Network places Public and Patient Involvement (PPI) at its core – this ensures 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
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.”
RDCTN PPI in Action
- Our PPI Liaison Officer is dedicated to ensuring all our efforts align with the genuine needs and priorities of those affected by rare disease.
- Through a dedicated panel we actively partner with individuals living with rare diseases in shaping all aspects of our operations from recruitment strategies to research agendas and funding decisions.
- Through committees and workshops, we provide platforms where patients, caregivers, and advocates can voice their needs and share their insights.
- Our strong presence on social media ensures ongoing communication and transparency, keeping the rare disease community well-informed and involved.
- By partnering with Health Research Charities Ireland, the national umbrella organisation of charities engaged in health, medical and social care research, we can access a wealth of PPI experience and a network representing over 2 million people in Ireland.
- Outcomes are not just scientifically relevant but can have profound impact on the lives of patients, caregivers, and families.
- Inclusivity, communication, and collaboration are priorities.
- Rare diseases are better understood, more effectively treated, and no one navigates their journey alone.
“Together, we are forging a path towards improved health outcomes and enhanced quality of life for individuals living with rare diseases across Ireland.”
Cassandra Dinius, RDCTN PPI Liaison Officer
Network Partners
