Patient Partner Experiences | Webinar Video
This webinar was held live on July 22, 2025.
Do you ever wonder how you can make a real difference - not just for yourself, but for future generations living with PKD?
You're not alone.
Many people affected by polycystic kidney disease want to speak up, give back, or help improve care for others - but they’re not sure where to start. That’s why we’re hosting a special online event:
Shaping Kidney Care: Patient Partner Experiences
This 1-hour roundtable features the powerful stories of four PKD patients who’ve used their lived experience to drive real change in kidney care across Canada. You’ll hear how they became patient partners - and how you can, too.
Here’s a glimpse of what you’ll hear:
- How one patient helped improve renal nurse orientation in Nova Scotia
- How another brought his Indigenous perspective to national guidelines on PKD care
- How one helped develop a pain resource in British Columbia for PKD patients
- And how another has helped build the patient engagement program at Canada’s largest transplant centre in Toronto
Whether you’re newly diagnosed, in late-stage kidney disease, post-transplant, or a caregiver or donor - your voice matters. And this webinar will show you just how powerful it can be.
If you’ve ever wanted to help others affected by PKD, this is your moment to learn how.
About the Participants
Brenda Mackenzie is a PKD patient and kidney transplant recipient who co-founded the Halifax Chapter of the PKD Foundation of Canada, and the Halifax Walk to END PKD. She is a valued PKD ambassador and kidney transplant advocate who has been involved in the Kidney Patient Advisory Committee of Nova Scotia Health.
Nick Ashawasega is a PKD patient whose ADPKD story was shared by Patient Voice in 2023. He has been involved as a patient partner in the Canadian review of the 2025 KDIGO ADPKD guideline, and he has a passion for improving PKD diagnosis and care in Indigenous communities.
Phaydy Phanouvong is a PKD and PLD patient who has received both a liver transplant (2021) and a kidney transplant (2025). She has shared her lived experience with PKD and PLD as a patient partner with BC Renal to improve kidney care, and empower others navigating chronic kidney and liver disease.
Scott Overholt is a PKD patient and kidney transplant recipient who has been involved in the development of the patient partner program at University Health Network (UHN) in Toronto. He continues to be an active member of six patient partner committees, and has served on 14 more.
Resources
Click here to see an email full of resources related to being a patient partner, including:
- A new research study that's investigating a new medication for ADPKD
- The definition of a patient partner
- Where to find patient partner opportunities
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