PKD Support & Resources

Living with PKD can be both emotionally and physically difficult. Knowing you are not alone can have a positive impact on your condition. Connecting with others who are going through a similar experience can give you the confidence to better manage your PKD.

Whether you’re sharing your story, listening to someone else’s, or catching up on the latest scientific breakthroughs in the understanding of PKD, being part of a community can be inspiring and healing. Get connected today, and explore some resources and patient-focused organizations within the PKD community.

This is not an exhaustive list. Please note that Otsuka does not control or influence any of these websites.

Foundations and informative sites

American Association of Kidney Patients (AAKP)

Education and advocacy for kidney patients in the United States

American Kidney Fund

Provides charitable assistance to dialysis patients who need help with the costs of treating kidney failure


A service of the US National Library of Medicine, with information on over 900 diseases

National Kidney Foundation

Peer support and information for kidney patients

PKD Foundation

Dedicated to PKD research and education

PKD International

Global alliance of patient organizations worldwide, dedicated to finding a cure and offering disease education for PKD


National Institutes of Health

Information on ADPKD from the National Center for Advancing Translational Sciences

Urology Care Foundation

Promotes urology research and education

Online Communities

AAKP Renal Support Groups

A list of renal support groups, broken down by state

PKD Health Notes

Health and nutrition blog for PKD patients written by a renal dietitian

PKD Will Not Beat Me

A PKD support blog written by a PKD patient

The organizations and resources listed are not controlled or influenced by Otsuka America Pharmaceutical, Inc. (OAPI). Any information or links are provided merely as a convenience, and OAPI shall not be liable for any use of this information. In addition, the provision of this information does not mean that OAPI endorses or accepts any responsibility for the content of the organizations or resources, or the consequences of your use thereof.