Living with polycystic kidney disease (PKD) affects more than the body. It can shape how you think, feel, relate to others, and imagine the future. Uncertainty, waiting, big medical decisions, and long stretches of “not knowing yet” can weigh heavily over time.
If you’re feeling anxious, overwhelmed, isolated, or simply tired of carrying it all alone, that’s perfectly understandable. You’re responding to a very real situation. Support matters, and you deserve access to it.
The PKD Foundation of Canada offers a range of mental health and peer support resources designed specifically for people affected by PKD. These supports meet people where they are, whether they're newly diagnosed, approaching late-stage disease, supporting a loved one, or living life after transplant.
PKD Mind Matters Chats
These free, monthly peer support meetings are designed for people navigating late-stage PKD, including dialysis, transplant planning, or post-transplant adjustment. Caregivers, family members, and loved ones are also welcome.
There are no presentations, no slides, and nothing is recorded. These gatherings focus on real conversation, shared experience, and mutual understanding.
While the discussions are geared toward late-stage PKD, people at all stages are welcome. If late-stage questions are on your mind, or if you’re supporting someone who is further along, this space is for you.
The goal is not to fix anything. It’s to feel less alone.
Ongoing Connection on My PKD
Support doesn’t have to end when a meeting does. My PKD is the PKD Foundation of Canada’s free, private online community, created so people affected by PKD can connect, learn, and belong on their own time. Inside My PKD, you’ll find:
This is a dedicated space for deeper conversations about complex topics such as dialysis decisions, transplant readiness, living donor questions, grief, fear, and uncertainty. This group allows for more nuanced discussions with others who truly understand the late-stage experience.
The My PKD forum gives members a place to ask questions, share experiences, and learn from others across Canada. Conversations range from practical concerns to emotional check-ins, and participation is always optional. Reading quietly is welcome, too.
Members have access to a growing library of PKD-specific mental health and wellness content, including webinar recordings, workshops, blog articles, and curated links to external resources. Everything is selected with PKD realities in mind.
Events and Support Beyond Our Organization
Living with PKD often means navigating many systems at once. To make that easier, My PKD also lists a wide variety of PKD–related events and supports from other trusted organizations, all in one place.
These may include:
- Living donor education sessions
- Peer support programs for kidney patients, caregivers, transplant recipients and living organ donor
This shared calendar helps reduce the burden of searching for help when energy is already limited.
A Place to Belong
You don’t have to be in crisis to seek support. You don’t need to know exactly what you’re looking for. Many people come to My PKD simply wanting to feel understood, or to hear from someone who has been there before.
Mental health support can look like listening, learning, sharing, or just sitting with others who get it.
If you’re looking for information, connection, or a sense of belonging, we invite you to explore My PKD and find the level of engagement that feels right for you.
Support is here. You don’t have to do this alone.