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Events
April 2

7:00 pm - 8:00 pm

New England Community Meeting: The Value of Genetic Testing in PKD
April 4

11:00 am - 1:00 pm

PKD Thrive Community Meeting
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ADPKD Registry

THANK YOU FOR BEING PART OF THE COE PROGRAM!
Welcome, as a patient navigator within our Centers of Excellence (COE) network, you have access to this page where you will find patient navigation training materials, quick link resources, and patient-facing handouts. If you have resource recommendations, please email carecenters@pkdcure.org.

Mark your calendars
Quarterly Virtual Patient Navigator Meeting
Tuesday, April 14 at 11:00 a.m. CT (12:00 p.m. ET)
September 2026
January 2027

2026 Annual PKD Centers of Excellence Conference
Hybrid | Chicago, IL | June 11-12 | Register Here

2026 PKD Connect Conference (PKDCON)
Hybrid | Chicago, IL | June 12-13 | Register Here

Patient-Facing Resources

If you’d like to request physical copies of select patient facing materials to be mailed to your institution, please reach out to carecenters@pkdcure.org.

ADPKD Patient Handbook - English
Download
ADPKD Patient Handbook - Spanish
Download
ARPKD Patient Handbook
Download
PKD Connect - Brochure
Download
Cooking Well: Delicious, everyday recipes for the PKD Family
Download
Understanding Your Risk for ADPKD Progression - Brochure
Download
Healthy Lifestyle - Otsuka Handout
Download
Your Guide to ADPKD and Genetic Testing - Medscape/PKDF Handout
Download
When to Seek Care for a Ruptured Cyst Handout
Download
What to Do When Your Child Receives a PKD Diagnosis Handout
Download
Spanish Speaking One Page Handouts
Download
ADPKD Registry Handout
Download
Advocacy Handout
Download
Community Handout
Research Handout
Download
Get Involved Handout
About PKD Handout
Download
Centers of Excellence Program Handout
Tolvaptan Take Home Tips Handout
Understanding the KDIGO 2025 ADPKD Clinical Guideline
Download
Patient Navigator Training Materials
Introduction to the PKD Foundation Centers of Excellence Program
Watch Here
Patient Navigator Introduction and Training Webinar - Part 1
Download
Patient Navigator Introduction and Training Webinar - Part 2
Download
External Nutrition in PKD Resources

Journal of Renal Nutrition: Navigating Nutrition for Autosomal Dominant Polycystic Kidney Disease

 

NephU: Hot Topics in Polycystic Kidney Disease (PKD) Nutrition

 

NIH: Polycystic Disease Diet

 

KDIGO: Key Takeaways for

 

Clinicians from the KDIGO 2025 Clinical Practice Guideline for the Evaluation, Management, and Treatment of ADPKD: Lifestyle and psychosocial aspects (pg. 7)

 

Mayo Clinic Press: Slow Down polycystic kidney disease (PKD) by eating well

COE Conference Videos
2024 COE Conference
Watch Here
2025 COE Conference
Watch Here
Example Resources from Peer Institutions
University of Kansas Medical Center

KU Center of Excellence Post Card – Example 1

 

KU Center of Excellence Post Card – Example 2

 

KU Center of Excellence Post Card – Example 3

Mayo Clinic Rochester - Tolvaptan Resources

Tolvaptan Pharmacy and Contacts

 

Tolvaptan REMS Patient Enrollment Form – Blank

 

Tolvaptan Take Home Tips

Mayo Clinic Jacksonville - ADPKD Patient Education Slideshow PDF

Download Slides

Patient Navigator Quarterly Meetings
May 2025
Watch Now
Important:

The content on this page is for private PKD Foundation use only. You may not copy, reproduce, distribute, publish, display, modify, transmit, distribute, or in any way exploit any such content found on this web page.