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 29, 2025
12:00 – 1:00 p.m. CST
2025 Virtual Centers of Excellence Conference
Friday, September 12, 2025
12:00 – 4:00 p.m. CST
Patient Facing Resources
-
ADPKD Patient Handbook - English
The purpose of this handbook is to provide information about ADPKD. It will be useful to those who have the disease, those who are at risk due to an affected parent as well as invested family members and friends. It is not intended for those affected by autosomal recessive polycystic kidney disease (ARPKD).
-
ADPKD Patient Handbook - Spanish
El propósito de este manual es proporcionar información sobre la enfermedad renal poliquística autosómica dominante (ERPAD). Será un documento útil para aquellas personas que tienen la enfermedad, para las que tienen riesgo de tenerla debido a un progenitor afectado, así como para los familiares y amigos involucrados. No está dirigido a los pacientes con enfermedad renal poliquística autosómica recesiva (ERPAR). Para los pacientes con esta enfermedad, hay un manual disponible en pkdfoundation.wpenginepowered.com. En lo sucesivo, nos referiremos a la ERPAD simplemente como ERP.
-
PKD Connect - Brochure
In this brochure, learn about resources available, like the Peer Mentor Program, the ADPKD Registry, the PKD Hope Line, and information to navigate a PKD diagnosis and manage living with the disease.
-
Cooking Well: Delicious, everyday recipes for the PKD Family
Author Jacob Taylor, Ph.D., RD, LD writes that “this cookbook provides those with PKD, who are looking to play an active role in their disease, a helpful hand in understanding how to change their diet, with recipes to suit.”
-
Understanding Your Risk for ADPKD Progression - Brochure
-
Healthy Lifestyle - Otsuka Handout
-
Your Guide to ADPKD and Genetic Testing - Medscape/PKDF Handout
-
When to Seek Care for a Ruptured Cyst Handout
-
What to Do When Your Child Receives a PKD Diagnosis Handout
-
Spanish Speaking One Page Handouts
-
ADPKD Registry Handout
-
Advocacy Handout
-
Community Handout
-
Research Handout
-
Get Involved Handout
-
About PKD Handout
Patient Navigator Training Materials
-
Patient Navigator Introduction and Training Webinar - Part 1
-
Patient Navigator Introduction and Training Webinar - Part 2
Example Resources from Peer Institutions
-
University of Kansas Medical Center
-
Mayo Clinic Rochester - Tolvaptan Resources
-
Mayo Clinic Jacksonville - ADPKD Patient Education Slideshow PDF
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.