Terms and conditions

This website is an educational and informational service provided by the PKD Foundation, with the express condition that users agree to be bound by the terms and conditions set forth in this User Agreement, as they may be modified from time to time. Your consultation and use of this website constitutes your acknowledgment and acceptance of all of the following terms and conditions.


You acknowledge that the information on this website is provided “as is” for general information only. This website does not offer medical advice or recommendations and individuals should not rely on the information posted on this website as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. The PKD Foundation strongly recommends that care and treatment decisions related to polycystic kidney disease and any other medical condition be made in consultation with a patient’s nephrologist or other qualified health care professionals who are familiar with the individual’s specific health situation. The PKD Foundation makes no representations with respect to the information, services, products or message on this website and specifically disclaims any other warranties, including but not limited to implied or express warranties of merchantability or fitness for any particular usage, application or purpose. The PKD Foundation makes no warranties of any kind regarding the operation of this website, including but not limited to any warranty of accuracy, completeness, uptime, currency, reliability, merchantability or fitness for a particular purpose, or any warranty that these pages, or the server that makes them available, are free of viruses, worms, Trojan horses, other harmful elements or other code that manifest contaminating or destructive properties and such warranties are expressly disclaimed.

Donation disclaimer

Please consult your personal advisors on all legal, tax, or financial issues related to your gift or personal matters. Nothing contained on this website or in any of its documents, attachments, or links: (a) should be considered legal, tax, or financial advice, (b) represents the signature of the sender or PKD Foundation, (c) is intended or written to be used, and cannot be used for the purpose of avoiding tax-related penalties. For information about the specific tax benefits to which you may be entitled through your charitable gifting of appreciated (or even depreciated) stock or securities, please consult your tax advisor or attorney.

Discussion forums

PKD discussion forums contain user-submitted content, comments and opinions, and they do not necessarily reflect the views and opinions of the PKD Foundation. Information shared in the forums is not medical advice. Please consult your nephrologist or health care team for information and guidance specific to your health. Content in the discussion forums is searchable. You can post anonymously or through a username you create, so your name will not be used unless you choose to do so. If you are under the age of 13, you may not use the discussion forums. Discussion forum participants are required to adhere to the following guidelines:

  • Use appropriate content and language. Any posts that contain personal attacks, profanity or inappropriate images or links will be removed.
  • Make sure your posts contribute to the conversation and on-topic.
  • Share your personal thoughts, ideas and experiences. Do not infringe on intellectual property rights including copyrights and trademarks of other individuals or organizations.
  • Do not share personal information such as addresses, phone numbers or email addresses.
  • Do not collect or store personal data about other users.
  • Do not impersonate anyone or any entity or falsely state or misrepresent your affiliation with a person or entity.
  • Spam, advertising, self-promotion or solicitation of any kind is prohibited.

Failure to adhere to these guidelines could result in your post being removed and your account being suspended. Although the PKD Foundation may remove content that violates these rules or for any other reason, the PKD Foundation does not exert editorial control over information or materials posted by third parties in these areas or in materials that are emailed by third parties using email discussion lists. The PKD Foundation is not responsible for monitoring any materials posted by any third party or for verifying that such information or materials are accurate, timely, reliable, suitable, complete, non-infringing, or free from technical defects. These limitations of warranties and liability apply to all interactive forums. You acknowledge that user submitted content is not endorsed by the PKD Foundation and such user content should not be considered to have been reviewed, screened, or approved by the PKD Foundation. You should exercise discretion before relying on information contained in user content. We may, in our sole discretion, terminate your password, account (or any part thereof) or use of the website, and remove any user submitted content from a forum at any time and for any or no reason. The PKD Foundation will not be liable to you or any third party for any termination of your access to the website or deletion of any user submitted content on the website. We may preserve and disclose user submitted content if required to do so by law or we believe in good faith that such preservation or disclosure is reasonably necessary to comply with legal process, enforce this Agreement, respond to a claim that user submitted content violates any third party’s rights, or protect the right, property or personal safety of the PKD Foundation, any users of the website, and the public.

Links from this website

The PKD Foundation makes no representation, warranty or endorsement, express or implied, as to any of the information, services, products or messages on any other websites which may be accessed through a hyperlink on this website. In particular, these links are provided for convenience of reference only and are not intended as an endorsement by the PKD Foundation or individual operating the website or a warranty or endorsement of any type regarding the website or the information, services, products or messages posted on or available from such website.

Copyright and trademark

Unless otherwise indicated, all information contained on this website, such as text, graphics, logos, button icons, images, audio and video clips, is copyrighted by and proprietary to the PKD Foundation. The content displayed on any page of this website may be used for personal and noncommercial uses which do not harm the reputation of the PKD Foundation, provided that the user does not remove any trademarks, copyright and any other notice contained in such content. The name and mark, the PKD Foundation and its attendant logos and taglines, are trademarks of the PKD Foundation and may not be used or reproduced without its prior written consent.

No unlawful or prohibited use

As a condition of your use of this website, you warrant to the PKD Foundation that you will not use this website for any purpose that is against the law or prohibited by these terms. If you violate any of these terms, your permission to use this website automatically ends. You may not without our prior written permission use any computer code, data mining software, “robot,” “bot,” “spider,” “scraper” or other automatic device, or program, algorithm or methodology having similar processes or functionality, or any manual process, to monitor or copy any of the Web pages, data or content found on this website or accessed through this website. You may not republish PKD Foundation content or other content from this website on another website or use in-line or other linking to display such content without our permission. You may not introduce viruses, spyware, or other malicious code to this website. You represent and warrant that you use frequently updated, commercially standard virus protection software to ensure that the system you use to access our website is virus free.

Changes to the website and these terms

We may make improvements or changes in the information, services, products, and other materials on this website, or terminate this website at any time. We may modify this Agreement at any time, and such modifications will be effective immediately upon posting of the modified Agreement. Accordingly, you agree to review the Agreement periodically, and your continued access or use of this website will be deemed your acceptance of the modified Agreement.


You agree that you will hold harmless the PKD Foundation and its officers, directors, agents, employees, and volunteers from all claims arising out of or related to your access or use of, or your inability to access or use, this website or the information, services, products or messages contained in this website or other websites to which it is linked, including but not limited to claims that you have found something you have heard, viewed or downloaded from this website or another website to which it is linked to be obscene, offensive, defamatory, or infringing upon your intellectual property rights. In no event will the PKD Foundation or the contributors of information to this website be liable to you or anyone else for any decision made or action taken by you in reliance on such information or for any consequential, special or similar damages, even if advised of the possibility of such damages. YOU HEREBY RELEASE AND FOREVER WAIVE ANY AND ALL CLAIMS YOU MAY HAVE AGAINST THE PKD FOUNDATION, ITS OFFICERS, DIRECTORS, AGENTS, EMPLOYEES, AND VOLUNTEERS FOR LOSSES OR DAMAGES YOU SUSTAIN IN CONNECTION WITH YOUR USE OF THIS WEBSITE. YOU EXPRESSLY UNDERSTAND AND AGREE THAT THE PKD FOUNDATION SHALL NOT BE LIABLE FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, CONSEQUENTIAL OR EXEMPLARY DAMAGES, INCLUDING BUT NOT LIMITED TO, DAMAGES FOR LOSS OF PROFITS, GOODWILL, USE, DATA OR OTHER INTANGIBLE LOSSES (EVEN IF ADVISED OF THE POSSIBILITY OF SUCH DAMAGES), RESULTING FROM: (i) THE USE OR THE INABILITY TO USE THE WEBSITE OR FORUMS; (ii) THE COST OF SUBSTITUTE SERVICES RESULTING FROM ANY DATA, INFORMATION OR SERVICES OBTAINED OR MESSAGES RECEIVED OR TRANSACTIONS ENTERED INTO ON THE WEBSITE OR THROUGH OR FROM THE FORUMS; (iii) UNAUTHORIZED ACCESS TO OR ALTERATION OF YOUR TRANSMISSIONS OR DATA; (iv) STATEMENTS OR CONDUCT OF ANY THIRD PARTY ON THE WEBSITE; OR (v) ANY OTHER MATTER RELATING TO THE WEBSITE OR THE SERVICES. IN NO EVENT WILL OUR MAXIMUM LIABILITY TO YOU EXCEED $100.

Governing law

This website (excluding linked sites) is controlled by the PKD Foundation, which is headquartered in the State of Missouri, United States of America. It can be accessed from all 50 states, as well as from other countries around the world. As each of these places has laws that may differ from those of Missouri, by accessing this website both you and the PKD Foundation agree that the statutes and laws of the State of Missouri, without regard to conflicts of laws principles thereof, will apply to all matters arising from or relating to use of this website. You and the PKD Foundation also agree and hereby submit to the exclusive personal jurisdiction and venue of Jackson County, Missouri and the United States District Court with respect to such matters. The PKD Foundation makes no representation that materials on the website are appropriate or available for use in other locations, and accessing them from territories where their contents are illegal is prohibited. Those who choose to access this website from other locations do so on their own initiative and are responsible for compliance with local laws.

Linking from other websites

The PKD Foundation may grant the owner of a website permission to use a hyperlink to this website from its website, provided: (a) any such link must clearly be marked “the PKD Foundation;” (b) the appearance, position and other aspects of either the link or the host website may not be such as to damage or dilute the goodwill associated with the PKD Foundation’s name and trademarks; (c) the appearance, position and other aspects of either the link or the host website may not create the false appearance that any other entity is associated with or sponsored by the PKD Foundation; and (d) the link, when activated by a user, must display this website full-screen and not with a “frame” on the linked website. The owner of any website with a hyperlink to this website agrees to the foregoing terms and agrees to delete any such link upon notice from the PKD Foundation that such permission has been revoked, which notice may be given at any time and for any reason. The PKD Foundation is not responsible for the information or materials contained on websites linking to this website. Links to this website are provided for convenience of reference only and are not intended as an endorsement by the PKD Foundation of the organization or individual operating the host website or a warranty of any type regarding the host website or the information on the host website.

Opt-out policy

If, at any time after registering for information or an event, you change your mind about receiving information from us, you have the ability to opt out of being contacted by the PKD Foundation at any time. To opt out of receiving emails, telephone solicitations or other forms of contact from the PKD Foundation, send an email to pkdcure@pkdcure.org with “Opt-Out” in the subject line, or a letter by postal mail to:

PKD Foundation
ATTN: Opt-Out
1001 E 101st Terr, Suite 220
Kansas City, MO 64131

Please specify which particular type of contact you are choosing to opt out from (i.e. only solicitations, only emails, only information regarding a specific event, only postal mail, only third-party emails, etc.). Be sure to include your full name, any business mailings and email addresses. If we are able to locate your contact information based on the information you provide us, it will be removed from the areas you referenced in our databases and mailings lists.