Download Patient Handbooks

Handbooks are available in digital and print versions at no cost to you. We ask that you please consider requesting the digital version as we do incur some costs to print and mail hard copies. We are only able to mail hard copy packets within the United States. The digital version will be sent to you immediately. There are three versions of the handbook: one for autosomal dominant polycystic kidney disease (ADPKD), which is also available in Spanish, and one for autosomal recessive polycystic kidney disease (ARPKD).

ADPKD Patient Handbook
ARPKD Patient Handbook
Descargar una Copia Electrónica
Download Handouts

Download our patient education handouts that you can print right at home in your office.

About PKD

Reviews the basics of ADPKD and ARPKD. 

When to Seek Care for a Ruptured Cyst

Reviews the signs and symptoms of a ruptured cyst and when to seek help.

What to do When Your Child Receives a PKD Diagnosis

Includes practical tips and resources to empower caregivers and parents.

Tolvaptan Take Home Tips

This tip sheet explains everything you need to know to take the medicine safely, stay on track with labs and follow-up care, and manage side effects.

Your Guide to Genetic Testing

Provides the basics of genetic testing for PKD, discusses when to consider testing and includes questions to ask your doctor.

ADPKD Registry

Discusses why the ADPKD Registry matters, how it works and how to join.

Join Your Community

Shows you how to find a PKD community near you and how you can get involved as a PKD Foundation volunteer.

Get Involved

Reviews all the ways you can get involved with the Foundation, from the Walk for PKD to sharing a story or advocating on Capitol Hill.

Other Resources for Clinicians
Fellowships

To move us forward in finding treatments, we select outstanding researchers as recipients of PKD Foundation fellowships. 

Grants & Funding

We’ve proudly leveraged over $1B in federal research funding and dedicated $28M in PKD Foundation research project funding. 

UpToDate® Resources

The PKD Foundation is dedicated to providing medical professionals with comprehensive, evidence-based resources to support the education and empowerment of patients managing polycystic kidney disease (PKD). In collaboration with UpToDate®, a trusted clinical decision support resource, we've curated a selection of free and accessible peer-reviewed articles covering various aspects of PKD care.

These resources are invaluable for clinicians and also serve as informative materials for patients and caregivers seeking to deepen their understanding of PKD. Topics include diagnosis, treatment options, and management strategies for both children and adults living with PKD.