ADPKD Centers of Excellence Program

Patient Navigator Resource Page

Thank you for being a part of the ADPKD 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 savannam@pkdcure.org.

Mark your calendars

Quarterly Patient Navigator Meeting

TBD

Second Annual COE Conference

June 20th, 2024 | San Antonio, TX

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).

Download

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 pkdcure.org. En lo sucesivo, nos referiremos a la ERPAD simplemente como ERP.

Download

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.

Download Brochure – English

Download Brochure – Spanish

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.” 

Download Cook Book

Understanding Your Risk for ADPKD Progression - Brochure
Healthy Lifestyle - Otsuka Handout
Your Guide to ADPKD and Genetic Testing - Medscape/PKDF Handout
Patient Facing One Page Handouts - Spanish

Download Handouts

Patient Navigator Training Materials

Patient Navigator Introduction and Training Webinar - Part 1

Watch Presentation

Presentation Passcode: d03JXg4?

Download Slides

Patient Navigator Introduction and Training Webinar - Part 2

Watch Presentation

Presentation Passcode: =TCu*J1^

Download Slides

Example Resources from Peer Institutions

Mayo Clinic Jacksonville - ADPKD Patient Education Slideshow PDF

 

 

Last Updated April 2024

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