We're proud to share how the PKD community is helping advance research, care and support across Canada.

In this update:



• New Canadian PKD research
• Mental-health findings from our PKD community survey
• Planning for a new peer mentorship program
• And a chance to help shape what comes next

Together, We’re Creating a Better Future for People Living with PKD

During the first half of 2026, the generosity of our donors has helped us invest in research, listen more closely to people affected by PKD, and begin building stronger support for the future.

Advancing Canadian PKD Research

Research remains at the heart of our mission, and thanks to your support, we're continuing to invest in discoveries that have the potential to change lives.

This year, the PKD Foundation of Canada awarded Dr. Sol Carriazo the second installment of a 2-year research grant to explore how artificial intelligence can improve disease monitoring, predict progression, and help inform treatment decisions for people living with PKD.

Why it matters:

PKD affects everyone differently, making it difficult to predict how quickly the disease will progress or when treatment should begin.

Dr. Carriazo's research explores how artificial intelligence can analyze patient data to better predict disease progression and identify the most effective time for intervention.

This could help healthcare providers make more informed, personalized treatment decisions, ultimately improving care and quality of life for people living with PKD.

📍 Meet Dr. Carriazo at the Toronto Walk to END PKD on September 27.

This year, the PKD Foundation of Canada supported the publication of research by Montreal-based researcher Dr. Marie Trudel, a three-time PKD Foundation of Canada research grant recipient. Her work investigates a promising new therapeutic approach demonstrated to slow or halt the progression of polycystic kidney disease in mouse models. Read the publication here.

Why it matters:

Today, there is only one approved medication in Canada to slow the progression of ADPKD, and it it may not be suitable for everyone.

Dr. Trudel's research explored a different therapeutic approach and demonstrated promising results in slowing PKD progression in preclinical models.

By supporting the publication of these findings, the PKD Foundation of Canada is helping move innovative discoveries into the scientific community, paving the way for future research and bringing us closer to a future with more treatment options for people living with PKD.

📍 Meet Dr. Trudel at the Montreal Walk to END PKD on September 20.

Listening to the PKD Community

Understanding the Mental-Health Impact of PKD

Earlier this year, the PKD Foundation of Canada surveyed patients and caregivers across the country to better understand the mental health impacts of living with polycystic kidney disease.

The findings confirmed what many in our community have long shared:

• 74% said PKD has a moderate, significant, or severe impact on their mental health.
• 83% reported experiencing fear or uncertainty about the future.
• Nearly 7 in 10 experience anxiety related to living with PKD.
• More than half reported depression and body image concerns.
• Nearly half said a healthcare provider had never asked about their mental health, and most had never been referred to mental health or psychosocial support.

When we asked participants what would make the greatest difference, the message was clear. People wanted:

• PKD-informed counselling
• Better emotional support at the time of diagnosis
• Help navigating healthcare, work, and finances
• Opportunities to connect with others who truly understand the PKD journey

These findings reinforced an important reality: while medical care is essential, people living with PKD also need emotional support, trusted guidance, and meaningful connection throughout their journey.

Bringing Patient Voices to Healthcare Professionals

We're also proud to share that we submitted our findings from the PKD Mental Health Survey as an abstract, "Mental Health Across the Polycystic Kidney Disease Journey: Survey Findings on Psychosocial Burden and Support Gaps", and it has been accepted for an oral presentation at the 2026 Canadian Association of Nephrology Nurses and Technologists (CANNT) National Conference this October in St. John's, Newfoundland and Labrador.

By presenting these findings to nephrology nurses and healthcare professionals from across Canada, we're helping ensure the voices of people living with PKD inform future care, education, and support.

Turning Insights into Action

Building a New Peer Mentorship Program

We believe listening is only the first step. Acting on what we learn is what creates meaningful change.

Because our community identified peer support as one of its greatest unmet needs, we developed a proposal to create the PKD Foundation of Canada's first formalized Peer Mentorship Program, designed to connect individuals living with PKD with trained volunteers who have walked a similar path.

We're thrilled to share that this vision resonated with a generous family, whose gift has made the development and implementation of this pilot program possible.

Launching in 2027, the Peer Mentorship Program will offer encouragement, practical guidance, and hope to people navigating every stage of the PKD journey, from diagnosis to dialysis, transplantation, caregiving, and beyond.

Help Us Build It with the Community

We are now recruiting volunteers for our new Lived Experience Advisory Group.

The group will help shape the Peer Mentorship Program by sharing perspectives from across the PKD community, including:

• People living with ADPKD or ARPKD
• Caregivers and family members
• People receiving dialysis
• Transplant recipients
• Living organ donors
• Bereaved family members

By building the program with people who have firsthand experience, we can create support that responds to what the community truly needs.

Apply to join the advisory group

Looking Ahead

There's more to come in the rest of 2026. Together, we will:

• Bring communities together through the Walk to END PKD
• Present our mental-health findings to nephrology professionals
• Host the virtual PKD Summit in November
• Begin working with our Lived Experience Advisory Group
• Continue developing the Peer Mentorship Program for its 2027 launch

Thank You

Every breakthrough begins with research.

Every new program begins by listening.

Every step forward begins with people like you.

Thank you for being part of the PKD Foundation of Canada community.

Whether you've donated, fundraised, volunteered, attended an event or shared your story, you have helped create a future where people living with PKD have access to more treatment options, stronger support and renewed hope.

Working for a cure,

Your friends at the PKD Foundation of Canada

Every gift - no matter the size - can make a difference in the fight against PKD. Please consider making a donation today.

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