PKD Foundation Website Terms of Use

This website is an educational and informational service provided by the PKD Foundation. By using the website, you agree to these Website Terms of Use. We may amend these terms from time to time so please check back here frequently for updates.  THIS AGREEMENT CONTAINS A BINDING ARBITRATION PROVISION WHICH MAY BE ENFORCED BY THE PARTIES AND A WAIVER OF YOUR CLASS ACTION RIGHTS.

Disclaimer

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.

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.

Liability

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.

You agree that: (1) Any claim, dispute, or controversy (whether in contract, tort, or otherwise) arising out of, relating to, or connected in any way with the website or the services provided on the website will be resolved exclusively by final and binding arbitration conducted pursuant to the American Arbitration Association (“AAA”) Procedures for Consumer-Related Disputes in conjunction with the AAA Commercial Arbitration Rules (if and as applicable depending on the amount in controversy); (2) This arbitration agreement is made pursuant to a transaction governed by the Federal Arbitration Act (“FAA”), 9 U.S.C. §§ 1-16; (3) The arbitration will be held at the AAA regional office nearest you; (4) The arbitrator’s decision will be controlled by the terms and conditions of this Agreement; (5) The arbitrator will apply Missouri law consistent with the FAA and applicable statutes of limitations and will honor claims of privilege recognized at law; (6) There will be no authority for any claims to be arbitrated on a class or representative basis; arbitration can decide only your individual claims and the arbitrator may not consolidate or join the claims of other persons or parties who may be similarly situated; (7) The arbitrator will not have the power to award punitive damages against any party; (8) In the event that the administrative fees and deposits you are required to pay under the AAA rules exceed $125, and you are unable to pay the additional fees and deposits, the PKD Foundation retains the right to forward them to the AAA on the your behalf, subject to ultimate allocation by the arbitrator. In addition, if you are able to demonstrate that the costs of arbitration will be prohibitive as compared to the costs of litigation, the PKD Foundation retains the right to pay as much of your filing and hearing fees in connection with the arbitration as the arbitrator deems necessary to prevent the arbitration from being cost-prohibitive; and (9) If any part of this Arbitration Provision is deemed to be invalid or otherwise unenforceable or illegal, the balance of this Arbitration Provision will remain in full force and effect and will be construed in accordance with its terms as if the invalid or illegal provision were not contained herein. You understand that, in the absence of this provision, you would have had a right to litigate disputes through a court, including the right to litigate claims on a class-wide or class-action basis, and that You have expressly and knowingly waived those rights and agreed to resolve any disputes through binding arbitration in accordance with the provisions of this paragraph.

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.

Comments and submissions

PKD Foundation welcomes your comments, photos, videos, or any other content that you submit through or to the Site, or any content or information you publish through any social media and allow PKD Foundation to feature, such as your name, social media handle, accompanying text, and any images from your social media accounts (e.g. Twitter™, Instagram™, Pinterest™) (collectively, “User Content”) as long as the User Content submitted by you complies with these Terms of Use. You agree that any User Content: will be accurate; will not violate or facilitate the violation of any law or regulation; will not violate any right of a third party, including copyright, trademark, privacy or publicity rights; will not cause injury to any person or entity; and will not contain, or provide links to, obscene, profane, or threatening language, malware, political campaigning, commercial solicitation, chain letters, mass mailings, any form of “spam”, or any material that could be considered harmful, sexually explicit, indecent, lewd, violent, abusive, or degrading. You are solely responsible for the User Content you submit, and PKD Foundation assumes no liability for any User Content submitted by you. You acknowledge and agree that we reserve the right (but have no obligation) to do any or all of the following, in our sole discretion: (i) monitor User Content; (ii) alter, remove, or refuse to post or allow to be posted any User Content; and/or (iii) disclose any User Content, and the circumstances surrounding its transmission, to any third party. For any User Content you submit, you grant to PKD Foundation a non-exclusive, sub-licensable, fully paid-up, perpetual, irrevocable, royalty-free, transferable right and license to use, display, perform, transmit, copy, modify, delete, adapt, publish, translate, create derivative works from, sell and distribute such User Content and to incorporate the User Content into any form, medium, or technology, now known or hereafter developed, throughout the world, all without compensation to you. For this reason, do not send us any User Content that you do not wish to license to us, including any confidential information or any original creative materials such as stories, product ideas, computer code or original artwork. In addition, you grant to PKD Foundation the right to include the name provided along with the User Content submitted by you; provided, however, PKD Foundation shall have no obligation to include such name with such User Content. We are not responsible for the use or disclosure of any personal information that you voluntarily disclose in connection with any User Content you submit. You represent and warrant that you have all rights necessary for you to grant the licenses granted in this section, including but not limited to permission from or on behalf of any individuals that appear in the User Content to use, and grant to third parties such as PKD Foundation the right to use, their name, image, voice and/or likeness without compensation to you or any other person or entity. You further irrevocably waive any “moral rights” or other rights with respect to attribution of authorship or integrity of materials regarding User Content that you may have under any applicable law under any legal theory.

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.

 

Infringement claims/copyright agent

If you believe that any material contained on the website infringes your copyright or other intellectual property rights, you should notify Company of your copyright infringement claim in accordance with the following procedure. Company will process notices of alleged infringement which it receives and will take appropriate action as required by the Digital Millennium Copyright Act (DMCA) and other applicable intellectual property laws. The DMCA requires that notifications of claimed copyright infringement should be sent to this website’s Designated Agent who is:

By mail:

DMCA Copyright Agent
c/o PKD Foundation
1001 E 101st Terrace #220,
Kansas City, MO 64131

By phone: (816) 931-2600

By email, reference DMCA in subject line: pkdcure@pkdcure.org

To be effective, the notification must be in writing and contain the following information (DMCA, 17 U.S.C. §512(c)(3)):

  • Physical or electronic signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed;
  • Identification of the copyrighted work claimed to have been infringed, or, if multiple copyrighted works at a single online site are covered by a single notification, a representative list of such works at that site;
  • Identification of the material that is claimed to be infringing or to be the subject of infringing activity and that is to be removed or access to which is to be disabled, and information reasonably sufficient to permit the service provider to locate the material;
  • Information reasonably sufficient to permit the service provider to contact the complaining party, such as an address, telephone number, and, if available, an electronic mail address at which the complaining party may be contacted;
  • A statement that the complaining party has a good faith belief that use of the material in the manner complained of is not authorized by the copyright owner, its agent, or the law; and
  • A statement that the information in the notification is accurate, and under penalty of perjury, that the complaining party is authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.

Emails sent to pkdcure@pkdcure.org or purposes other than communication about copyright claims may not be acknowledged or responded to.

We will, in appropriate circumstances, terminate repeat infringers. If you believe that an account holder or subscriber is a repeat infringer, please follow the instructions above to contact Company and provide information sufficient for us to verify that the account holder or subscriber is a repeat infringer.

 

Page last reviewed June 2021