Centers of Excellence Program
Patient Navigator Resource Page
Quick Link Resources
Thank you for being a 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 savannam@pkdcure.org.
Mark your calendars
Quarterly Patient Navigator Meeting
Friday, October 4th @ 11AM – 12 PM EDT
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 pkdcure.org. 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
Patient Facing One Page Handouts - Spanish
Download Handouts
When to Seek Care for a Ruptured Cyst 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
Last Updated April 2024
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.
PKDF message board terms of use
By using this message board you acknowledge and agree to the following rules:
- Behave responsibly and respectfully towards all users, respecting their values, viewpoints, feelings and rights
- Statements, opinions and content are those of the individual users, the PKD Foundation does not endorse them
- The PKD Foundation reserves the right to delete any post at any time, including but not limited to those posts that are deemed to be spam, contain malicious content, flagged by other users or be otherwise inappropriate
- Avoid use of distracting text, font, colors, images or other content that is difficult to read
The following kinds of messages or content are prohibited:
- Content or hyperlinks to content that is illegal, obscene, defamatory, threatening, offensive, inflammatory, controversial, untrue, inaccurate or overtly religious, ideological or politically partisan
- Confidential information or content that infringes on intellectual property rights
- Spam and solicitations
- Requests for donations
- Advertisements for for-profit products and services
- Requests from or for volunteers
- Job opportunities or requests from job seekers
You agree that if you repeatedly or willfully violate these rules (or the Terms & Conditions), your right to use message boards can be suspended or terminated.
