ADPKD Centers of Excellence Program
Patient Navigator Resource Page
Quick Link Resources
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
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
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