We're thrilled to let you know that the video from our patient partner discussion is now available on our YouTube channel!

Shaping Kidney Care: Patient Partners

If you weren't able to attend live - or if you'd like to watch again - you can find the video on our YouTube channel, here. Get ready to be inspired by the stories of Brenda, Nick, Phaydy and Scott!

If this event has sparked something in you - a feeling that you want to make a difference but just haven’t been sure where to start - you’re not alone. That’s exactly how many patient partners begin their journey!

Find some useful links below.

If you’re between 25 and 65 and have ADPKD, you may be able to join the MAPLE study. It’s a research study testing a possible new treatment, with study locations in Ontario and Quebec.

Learn more: www.endPKD.ca/maple 🔗

A patient partner is someone with lived experience - either as a patient, caregiver, family member of a patient, or living donor - who works with healthcare teams, researchers, or organizations to improve how care is designed and delivered.

They offer insight and perspective that professionals can’t provide on their own.

And that voice is needed at every stage of PKD - not just for people who are facing transplant or dialysis, but also those newly diagnosed or in the early stages of PKD, parenting a child with PKD, managing PLD, or supporting a loved one.

If you're interested in getting involved yourself, here are some great places to start exploring:

🔹 Check your local hospital’s website – many have “patient and family advisory” pages or volunteer listings

🔹 Visit the bulletin board at your local kidney clinic, nephrology office, or dialysis clinic – opportunities are often posted there

🔹 Explore your local college or university (especially those with nursing, social work, or medical programs) – they sometimes recruit patient voices for curriculum or research

🔹 Visit the Kidney Foundation's website where you can find opportunities to participate in kidney research or clinical trials.

🔹 Visit KidneyLink – a Canada-wide portal that connects people to kidney research and engagement opportunities

🔹 Join My PKD, our free online community, and check the live feed or forum for new opportunities: MyPKD.ca

You don’t need to be a public speaker or a medical expert - you just need to care, and be willing to share what you’ve lived through.

If you’d like to talk about this further or get help finding the right kind of opportunity, feel free to reply to this email - we’d be happy to help point you in the right direction.

Thank you again for being part of this conversation. We’re so glad you’re here. 💙

Events like this are made possible by the generous gifts of our donors. Every gift - no matter the size - can make a difference in supporting the lives of those affected by PKD. Please consider making a donation today.

Working for a cure,

Your friends at the PKD Foundation of Canada

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