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Terms & Conditions

Terms & Conditions of Use Agreement
International Foundation for CDKL5 Research
& CDKL5.com

Thank you for visiting our site. In this Terms & Conditions of Use Agreement, “we”, “our” or “us” refers to International Foundation for CDKL5 Research & CDKL5.com and their affiliates (collectively referred to as “IFCR”). IFCR and affiliates provide use of the website CDKL5.com to you subject to the following terms and conditions.

PLEASE READ THE ENTIRE TERMS & CONDITIONS OF USE CAREFULLY BEFORE YOU USE ANY PART OF THIS WEBSITE. IF YOU DO NOT AGREE TO ALL THE TERMS & CONDITIONS SET FORTH HEREIN YOU MAY NOT USE THIS WEBSITE OR ANY OF ITS FEATURES OR SERVICES. BY USING THIS WEBSITE OR ITS FEATURES OR SERVICES, YOU ARE DEEMED TO HAVE ACCEPTED THESE TERMS & CONDITIONS OF USE IN THEIR ENTIRETY.

YOU MUST BE A U.S. RESIDENT AND BE AT LEAST 18 YEARS OLD TO USE THIS WEBSITE OR ANY OF ITS FEATURES OR SERVICES.

NO MEDICAL ADVICE
THIS SITE IS NOT INTENDED FOR RENDERING OR OBTAINING MEDICAL ADVICE. BY USING THIS SITE YOU AGREE THAT YOU HAVE READ AND ACKNOWLEDGE THE MEDICAL DISCLAIMER.

Effective Date: This Terms & Conditions of Use Agreement was last updated January 2017.

Website Privacy Statement

Account information and certain other information about you and our Members are subject to our Website Privacy Statement. For more information, please see our full
Website Privacy Statement.

This Terms & Conditions of Use Agreement (“Agreement”) sets forth the website use guidelines and standards of use of IFCR for Users and/or Members. By using the IFCR website you (as a “User” or a “Member”) agree to these terms and conditions. A “User” is defined as an unregistered visitor to the website (which means that you simply browse the IFCR website, including through a mobile device or otherwise attempt to use IFCR without being a registered Member). A User is different from a Member, whereas a “Member” has registered to establish an account on CDKL5.com and receive emails with news, current information, research updates, and events. If you do not agree to the terms and conditions of this Agreement, you should immediately discontinue use or viewing of this website. If you wish to become a Member, communicate with other Members and/or make use of CDKL5.com, its forum, and other features or services, you must read this Agreement and indicate your acceptance of the same during the registration process. We reserve the right, at any time, to modify, alter, or update the terms and conditions of this Agreement without prior notice. Modifications shall become effective immediately upon being posted at the IFCR website. Your continued use of the website after amendments are posted constitutes acknowledgment and acceptance of the terms & conditions of use and its modifications. Except as provided in this paragraph, this Agreement may not be amended.

1.0 Description of Service – Limited Use License Agreement

IFCR operates CDKL5.com, which is a complimentary information service website dedicated to anyone affected by CDKL5 and to finding a cure for CDKL5. CDKL5.com allows Members to create an online account in order to communicate with others affected by CDKL5, obtain email updates on research and information regarding CDKL5 and events and current information for IFCR. Any information provided by IFCR to a User is for non-commercial personal use only. You are licensed to use the Content only for non-commercial personal use and may download Content only as relevant to that use. The download of the whole or significant portions of any content or database is prohibited. Resale of any Content or database or portion thereof is prohibited. Violation of this License Agreement may result in legal action being taken against you.

2.0 Proprietary Rights to Content

You acknowledge and agree that this site contains information, data, software, photographs, graphics, text, images, logos, icons, typefaces, audio and video material, and/or other material (collectively referred to as “Content”) protected by copyrights, trademarks, patents, service marks, or other proprietary rights, and that these rights are valid and protected in all forms, media, and technologies existing now or hereinafter developed.

All Content displayed on this site and all software, data and information used to provide this Web site and the Content, including text and images, method of display and presentation, source code, embedded routines and programs and other materials, as well as all copyrights, trademarks, service marks, patents and other intellectual property rights, or proprietary rights therein or thereto, are owned by IFCR, its affiliates, suppliers or licensors, and are protected under U.S. and international copyright, trademark and other applicable laws and treaties including international trade and export laws. All rights not expressly granted to you by us in this License Agreement are reserved to IFCR and you acknowledge and agree that you do not acquire any ownership rights by accessing or downloading copyrighted material or Content from the Web site as authorized hereunder.

Portions of IFCR may contain Member provided content (collectively referred to as “Member Content”) which includes but is not limited to information, postings, links, audio and video material, to which Members may view, search and may contribute appropriate Member Content. For this Member Content, IFCR is a distributor only and claims no ownership rights. By submitting Member Content to IFCR, Members grant IFCR, the foundational host of the Website, a license to use, host, distribute that Member Content and allow hosting and distribution of that Member Content, to the extent and in that form or context we may exclusively deem appropriate. Should a Member contribute Member Content to the site, it is understood that it will be seen and used by other Members and possibly Users under the License Agreement described herein. We are under no obligation to use the Member Content, in whole or in part, that a Member submits. Members should submit only Member Content which belongs to them and will not violate any law, property or other rights of any person or organization. Inappropriate Member Content provided to IFCR will be subject to immediate removal. IFCR in its sole capacity has the right to determine the appropriateness of any Member Content. Any Member who provides Member Content that has been deemed inappropriate will be subject to immediate membership termination and removal from the Website and Services.

You may not modify, remove, delete, augment, add to, publish, transmit, participate in the transfer, license sell, create derivative works from, or in any way exploit any Content, in whole or in part. If no specific restrictions are displayed, you may make one copy of select portions of the Content, provided that the copy is made only for your personal information and non-commercial use and that you do not alter or modify the Content in any way, and maintain any notices contained in the Content, such as all copyright notices, trademark legends, or other proprietary rights notices. Except as provided in the preceding sentence or as permitted by the fair use privilege under U.S. copyright laws, you may not upload, post, reproduce, perform, or distribute in any way any Content without obtaining permission of the owner of the copyright, trademark or other proprietary right.

3.0 Disclaimers

YOU EXPRESSLY UNDERSTAND AND AGREE THAT:

THE INFORMATION THAT IS PROVIDED IN THIS WEBSITE IS A PUBLIC SERVICE OF IFCR. IT SHOULD NOT IN ANY WAY SUBSTITUTE FOR THE ADVICE OF A QUALIFIED HEALTH CARE PROFESSIONAL AND IT IS NOT INTENDED TO CONSTITUTE MEDICAL ADVICE.

YOUR USE OF THE SITE IS AT YOUR SOLE RISK. THE SITE IS PROVIDED BY IFCR ON AN “AS IS” AND ON AN “AS AVAILABLE” BASIS ONLY. TO THE FULLEST EXTENT PERMITTED BY APPLICABLE LAW, IFCR MAKES NO REPRESENTATIONS OR WARRANTIES OF ANY KIND, EXPRESS OR IMPLIED, REGARDING THE USE OR THE RESULTS OF THIS WEBSITE IN TERMS OF ITS CORRECTNESS, ACCURACY, RELIABILITY, OR OTHERWISE. IFCR SHALL HAVE NO LIABILITY FOR ANY INTERRUPTIONS IN THE USE OF THIS WEBSITE. IN ADDITION, IFCR DOES NOT WARRANT OR REPRESENT THE FOLLOWING: (1) THE SITE WILL MEET YOUR REQUIRMENTS, (2) THE SITE WILL BE UNINTERRUPTED, TIMELY, SECURE, OR ERROR-FREE, (3) THE RESULTS THAT MAY BE OBTAINED FROM THE USE OF THE SITE WILL BE ACCURATE OR RELIABLE, (4) THE QUALITY OF ANY PRODUCTS, SERVICES, OR INFORMATION, OR OTHER MATERIALS OBTAINED BY YOU THROUGH THE SITE WILL MEET YOUR EXPECTATIONS, (5) THE SERVER THAT MAKES THE SITE AVAILABLE IS FREE FROM VIRUSES OR OTHER HARMFUL COMPONENTS; OR (6) ANY ERRORS IN THE SOFTWARE WILL BE CORRECTED. ANY MATERIAL DOWNLOADED OR OTHERWISE OBTAINED THROUGH THE USE OF THE SITE IS DONE AT YOUR OWN DISCRETION AND RISK AND YOU WILL BE SOLELY RESPONSIBLE FOR ANY LOSS OR DAMAGE INCURRED, INCLUDING BUT NOT LIMITED TO, DAMAGE TO YOUR COMPUTER SYSTEM OR LOSS OF DATA THAT RESULTS FROM THE DOWNLOAD OF ANY SUCH MATERIAL. YOU (AND NOT US OR ANY OF IFCR’S AFFILIATED COMPANIES OR ANY OF OUR OR THEIR RESPECTIVE LICENSORS OR VENDORS) ASSUME THE ENTIRE COST OF ALL NECESSARY SERVICING, REPAIR OR CORRECTION FOR ANY SUCH DAMAGE.

NO ADVICE OR INFORMATION, WHETHER ORAL OR WRITTEN, OBTAINED BY YOU FROM THE SITE SHALL CREATE ANY WARRANTY NOT EXPRESSLY STATED IN THESE TERMS & CONDITIONS OF USE.

THE MATERIAL AVAILABLE THROUGH IFCR IS FOR INFORMATIONAL PURPOSES ONLY. BEFORE YOU ACT ON ANY INFORMATION YOU’VE FOUND ON THIS SITE, YOU SHOULD INDEPENDENTLY CONFIRM ANY FACTS THAT ARE IMPORTANT TO YOUR DECISION. IF YOU RELY ON ANY INFORMATION OR SERVICE AVAILABLE THROUGH IFCR, YOU EXPRESSLY AGREE THAT YOU DO SO AT YOUR OWN RISK.

IFCR DISCLAIMS ALL WARRANTIES WITH REGARD TO THE INFORMATION PROVIDED, INCLUDING THE IMPLIED WARRANTY OF MERCHANTABILITY, IMPLIED WARRANTY OF FITNESS FOR A PARTICULAR PURPOSE, AND IMPLIED WARRANTY OF NON-INFRINGEMENT.

SOME JURISDICTIONS DO NOT ALLOW THE EXCLUSION OF IMPLIED WARRANTIES; THEREFORE THE ABOVE-REFERENCED EXCLUSION MAY NOT APPLY TO YOU.

NO MEDICAL ADVICE
THIS SITE IS NOT INTENDED FOR RENDERING OR OBTAINING MEDICAL ADVICE. BY USING THIS SITE YOU AGREE THAT YOU HAVE READ AND ACKNOWLEDGE THE MEDICAL DISCLAIMER.

4.0 Limitation of Liability

IFCR SHALL NOT BE LIABLE FOR ANY DAMAGES WHATSOEVER, AND IN PARTICULAR IFCR SHALL NOT BE LIABLE FOR ANY DIRECT, SPECIAL, INDIRECT, CONSEQUENTIAL, OR INCIDENTAL DAMAGES, OR DAMAGES FOR LOST PROFITS, LOST INCOME, LOSS OF REVENUE, OR LOSS OF USE, ARISING OUT OF OR RELATED TO THE USE OR THE INABILITY TO USE THIS WEBSITE OR THE INFORMATION CONTAINED IN IT, OR FOR THE COST OF PROCUREMENT OF SUBSTITUTE GOODS AND SERVICES OR RESULTING FROM ANY GOODS OR SERVICES PURCHASED OR OBTAINED OR MESSAGES RECEIVED OR TRANSACTIONS ENTERED INTO THROUGH THE SITE OR RESULTING FROM UNAUTHORIZED ACCESS TO OR ALTERATION OF YOUR TRANSMISSIONS OF DATA OR MEMBER CONTENT PROVIDED ON THE SITE BY YOU OR OTHER MEMBERS, WHETHER SUCH DAMAGES ARISE IN CONTRACT, NEGLIGENCE, TORT, UNDER STATUTE, IN EQUITY, AT LAW, OR OTHERWISE, EVEN IF IFCR HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES.

SOME JURISDICTIONS DO NOT ALLOW THE LIMITATION OR EXCLUSION OF LIABILITY FOR INCIDENTAL OR CONSEQUENTIAL DAMAGES, THEREFORE SOME OF THE ABOVE LIMITATIONS MAY NOT APPLY TO YOU. IF YOU ARE DISSATISFIED WITH ANY PORTION OF THIS WEB SERVICE, OR WITH ANY OF THESE TERMS OF USE, YOUR SOLE AND EXCLUSIVE REMEDY IS TO DISCONTINUE USING THIS SITE, SERVICE, AND ITS AFFILIATED SITES.

5.0 Waiver of Jury Trial

IFCR ALONG WITH ANY USER AND MEMBER HEREBY IRREVOCABLY WAIVE ANY AND ALL RIGHT TO TRIAL BY JURY IN ANY LEGAL PROCEEDING ARISING OUT OF OR RELATING TO THIS AGREEMENT OR ANY MEMBERSHIP AGREEMENT OR THE TRANSACTIONS CONTEMPLATED HEREBY.

6.0 Indemnification

You agree to indemnify and hold IFCR, its subsidiaries, affiliates, officers, agents, attorneys and employees, harmless from any claim or demand of any kind whatsoever, including reasonable attorneys’ fees and costs, made by any third party due to or arising out of the use of this Site, the violation of this Agreement, or infringement by User or Member of the Site using the User’s or Member’s computer, of any intellectual property or any other right of any person or entity.

7.0 COPPA Notice
CHILDREN ONLINE PROTECTION ACT NOTIFICATION

***Special Note for Parents or Guardians of Children

The Web site you are visiting was not designed for anyone under the age of 18. We are not responsible for any access or use of this Web site by children or minors under the age of 18. This Web site does not sell products designated for purchase by children under the age of 13 or anyone under the age of 18 nor is it designed for their use or entertainment.

Pursuant to 47 U.S.C. Section 230(d) as amended, we hereby notify you that parental control protections (such as computer hardware, software, or filtering services) are commercially available that may assist you in limiting access to material that is harmful to minors. Information identifying providers of such protections are available to you online.

Please see our COPPA Information provided in our Privacy Policy for more information regarding use of this website and children under the age of 13 and anyone under the age of 18.

8.0 Technology Export Control

Through the Bureau of Industry and Security and its use of the Export Administration Regulations, the United States government has implemented export control laws that regulate the export and re-export of technology originating from within the United States. This technology includes the electronic transmission of information or software. The export control laws regulate the exporting or re-exporting of this technology to foreign countries and to certain foreign nationals. You agree to abide by these laws and regulations, including but not limited to, the Export Administration Act and the Arms Export Control Act and not to transfer, by electronic transmission or otherwise, any Content derived from the Site to either a foreign national or foreign destination in violation of such laws.

9.0 Modifications and Interruption to Service

IFCR reserves the right to modify or discontinue the Website with or without notice to the User or Member. IFCR shall not be liable to a User, Member or any third party should IFCR exercise its right to modify or discontinue the Website. Each User and Member acknowledges and accepts that IFCR does not guarantee continuous, uninterrupted or secure access to our Website or Services and operation of our Website may be interfered with or adversely affected by numerous factors or circumstances outside of our operation or control.

10.0 Third-Party Sites

IFCR may include links to other sites on the Internet or World Wide Web that are owned and operated by online merchants, vendors, suppliers, manufacturers, material men, contractors, subcontractors, service providers and/or other third parties (collectively referred to as “Vendors”). Any such links to Vendors or third party sites are provided for your convenience only, and such links do not imply endorsement by IFCR of such other third party sites or Vendor sites or the content contained therein. You acknowledge that we are not responsible for the availability of, or the content located on or through, any third-party or Vendor site. You should contact the site administrator or webmaster for those third-party or Vendor sites if you have any concerns regarding such links or the content located on such sites. Your use of third-party or Vendor sites is subject to the terms & conditions of use and privacy policies of each site, and we are not responsible therein. We encourage all Users or Members to review said terms & conditions and privacy policies of all third-party and Vendor sites.

IFCR disclaims all warranties, express or implied, as to the accuracy, legality, reliability or validity concerning third party provided services and sites, and you agree that any recourse for dissatisfaction or problems with those services or sites will be sought from the third party provider and not from IFCR as you agree to waive any claim you may have against us with respect to such other sites.

11.0 Governing Jurisdiction

This TCUS will be governed by and construed in accordance with the laws of the United States of America, without regard to any principals of conflicts of law. You agree that any action at law or in equity that arises out of or relates to this Website or these Terms & Conditions of Use will be filed only in the state or federal courts located in Summit County, Ohio, and you hereby consent and submit to the personal jurisdiction of such courts for the purposes of litigating any such action.

12.0 Compliance with Laws and International Use

You assume all knowledge of applicable law and are responsible for compliance with any such laws. You may not use our website or services in any way that violates applicable state, federal, or international laws, regulations or other government requirements.

Furthermore, we make no representation that materials on this Website are appropriate or available for use in locations outside the United States, and accessing them from territories where their contents are illegal is prohibited. Those who choose to access this Website from other locations outside of the United States do so on their own initiative and at their own risk and are responsible for compliance with those local laws and regulations.

13.0 Copyright, Trademark, and Service Mark Information

All Content included or available on this site, including site design, text, graphics, interfaces, and the selection and arrangements thereof is the property of IFCR, with all rights reserved, or is the property of IFCR and/or third parties protected by intellectual property rights. Any use of materials on the website, including reproduction for purposes other than those noted above, modification, distribution, or replication, any form of data extraction or data mining, or other commercial exploitation of any kind, without prior written permission of an authorized officer of IFCR is strictly prohibited. Users and Members agree that they will not use any robot, spider, or other automatic device, or manual process to monitor or copy our web pages or the content contained therein.

International Foundation for CDKL5 Research™ is a proprietary mark of IFCR. IFCR’s trademarks may not be used in connection with any product or service that is not provided by IFCR, in any manner that is likely to cause confusion among Members, or in any manner that disparages or discredits IFCR.

All other trademarks displayed on IFCR’s website are the trademarks of their respective owners and may only be used with the permission of the particular owner. These other trademarks constitute neither an endorsement nor a recommendation of those Vendors. In addition, such use of trademarks or links to the web sites of Vendors is not intended to imply, directly or indirectly, that those Vendors endorse or have any affiliation with IFCR.

14.0 Notification of Claimed Copyright Infringement

We respect the intellectual property of others and we ask our Users and Members to do the same. If you believe that your work has been copied and is accessible on the Website in a way that constitutes copyright infringement, you may notify us by providing our copyright agent the following information:

  1. A description of the copyrighted work that you claim has been infringed;
  2. Identification of the URL or other specific location on the Website where the material you claim is infringing is located;
  3. Your name, address, telephone number, email address, and statement that you are an authorized person to act on behalf of the own er of the copyright;
  4. A statement by you that you have a good faith belief that the disputed use is not authorized by the copyright owner, its agent, or the law;
  5. An affidavit submitted by you, sworn to and made under the penalty of perjury, that the above information in your notice is accurate and that you are the copyright owner or are an authorized agent to act on behalf of the copyright owner.

Pursuant to Section 512(c) of the Copyright Revision Act, as amended by the Digital Millennium Copyright Act, IFCR designates the following individual as its agent for receipt of notifications of claimed copyright infringement.

By Mail:
International Foundation for CDKL5 Research
Attn: Website Copyright Notice Dept.
P.O. Box 926
Wadsworth, Ohio 44282

By Email: IFCR@cdkl5.com

15.0 Botnets

IFCR retains the right, at our sole discretion, to terminate any Member accounts involved with botnets and related activities. If any hostnames are used as command and control points for botnets, IFCR reserves the right to direct the involved hostnames to a honeypot, loopback address, logging facility, or any other destination at our discretion.

16.0 Spamming

Use of IFCR by you for spamming is strictly prohibited. By using IFCR, you agree not to use information concerning other users of this Website, or any items such users have listed or searched for on this Website (including listing information, user names, email addresses, telephone numbers, and/or other information), for any purpose. You may not post information directed to or collect personal information from any child or minor under the age of 18.

17.0 Miscellaneous Terms

These Terms & Conditions of Use constitute the entire agreement and understanding between you and us, superseding any prior agreements and understandings, and govern your use of the Website. You also may be subject to additional terms and conditions that may apply when you use affiliate services, third-party content or third-party software. Our failure to enforce or exercise any right or provision of these Terms & Conditions of Use shall not constitute a waiver of such right or provision. If any provision of these Terms & Conditions of Use shall be unlawful, void or unenforceable for any reason, the other provisions (and any partially-enforceable provision) shall not be affected thereby and shall remain valid and in full force and effect. You agree that these Terms & Conditions of Use and any other agreements referenced herein, including the Medical Disclaimer, may be assigned by IFCR, in our sole discretion, to a third party in the event of a merger or acquisition. The section titles and headings in these Terms & Conditions of Use are for convenience only and have no legal or contractual effect.

No agency, partnership, joint venture, employee-employer or franchiser-franchisee relationship is intended or created by these Terms & Conditions of Use.

Any rights not expressly granted herein are reserved by and for us.

Certain sections or pages on this Website may contain separate terms and conditions, which are in addition to these Terms & Conditions of Use. In the event of a conflict, the additional terms and conditions will govern for those sections or pages.

I HAVE READ THIS AGREEMENT AND AGREE TO ALL OF THE PROVISIONS CONTAINED ABOVE.

© Copyright 2017, International Foundation for CDKL5 Research. All Rights Reserved.

 


Disclaimer

Advertising and Sponsorship Policy & Medical Disclaimer
International Foundation for CDKL5 Research
& CDKL5.com
Thank you for visiting the International Foundation for CDKL5 Research (“IFCR”) at CDKL5.COM.

PLEASE READ THE ENTIRE ADVERTISING AND SPONSORSHIP POLICY & MEDICAL DISCLAIMER CAREFULLY BEFORE YOU USE THIS WEBSITE. IF YOU DO NOT AGREE TO ALL THE TERMS & CONDITIONS AS SET FORTH HEREIN YOU MAY NOT USE THIS WEBSITE OR ANY OF ITS FEATURES OR SERVICES. BY USING THIS WEBSITE OR ITS FEATURES OR SERVICES, YOU ARE DEEMED TO HAVE FULLY READ, UNDERSTAND AND ACCEPT ALL TERMS AND CONDITIONS INCLUDING BUT NOT LIMITED TO THE MEDICAL DISCLAIMER.

YOU MUST BE A LEGAL U.S. RESIDENT AND BE AT LEAST 18 YEARS OLD TO USE THIS WEBSITE OR ANY OF ITS FEATURES OR SERVICES.

Effective Date: This Advertising and Sponsorship Policy & Medical Disclaimer was last updated January 2016.

We reserve the right, at any time, to modify, alter, or update the terms and conditions of this website without prior notice. Modifications shall become effective immediately upon being posted at the CDKL5.com website. Your continued use of the website after amendments are posted constitutes acknowledgement and acceptance of the modifications.

MEDICAL DISCLAIMER
The IFCR website does not contain medical advice. The contents of this website are not intended to substitute for professional medical advice, diagnosis or treatment. Although efforts are taken to keep any medical information on the CDKL5.com website updated, we cannot guarantee that the information on our website reflects the most up-to-date medical research. The contents of this website, such as text, graphics, images and other material are intended for informational and educational purposes only and not for the purpose of rendering medical advice. Please consult your physician for medical advice. Always seek the advice of a physician or other qualified healthcare provider with any questions regarding a medical condition. Never disregard or delay seeking professional medical advice or treatment because of something you have read on from IFCR or the CDKL5.com website. Before taking medications of any kind including, over-the-counter drugs, supplements or herbs, consult a physician. IFCR does not endorse any medications, supplements, vitamins or herbs. A qualified health care provider should make a decision on medications based on each person’s medical history and current prescriptions. In any medical emergency call 911 immediately. IFCR does not recommend or endorse any specific test, physician, product, procedure, opinion or any other information provided on the CDKL5.com website. Reliance on any information provided by IFCR, IFCR employees, agents, assigns, others represented on the CDKL5.com website by IFCR’s invitation or other visitors, is solely at your own risk. IFCR thru its website CDKL5.com does not collect any personally identifiable health information and is not a health care provider, a health plan, a health care clearing house, or health care information data service provider for purposes of application of the Health Insurance Portability and Accountability Act of 1996 (HIPPA) or the Health Information Technology for Economic and Clinical Health Act (HITECH).

ADVERTISING AND SPONSORSHIP POLICY
The International Foundation for CDKL5 Research (“IFCR”) receives its funding primarily from donations and not from advertising or government sources. It is, however, the policy of IFCR to acknowledge financial or in-kind sponsorship of IFCR programs by foundations, governmental entities, or corporations, and it may infrequently allow for the advertisement of materials that are consistent with and related to the charitable purposes of IFCR. IFCR’s public acknowledgement of such sponsorship is done by display of the sponsor’s logo, slogan, general website address, and/or description of materials or services on the IFCR website. Any such practices are consistent with the requirements of the Internal Revenue Service of the United States of America. All such displays are clearly identified as related to the acknowledgement of a prior or ongoing sponsorship. All IFCR communications of sponsor’s information are provided only as a convenience to recipients of the IFCR communication and shall not include editorial content. These communications are limited in scope to content that would reasonably allow a recipient of IFCR’s communications to understand the name and nature of the sponsoring organization as well as its relationship to IFCR and its programs. IFCR does not endorse any product or service provided by a sponsor. In cases where IFCR links to the website of a sponsor, the IFCR does not regulate the content of the sponsor’s website and assumes no responsibility or liability for any claims or endorsements made on or linked to from a sponsor’s website. Advertisers and sponsors must not make unsubstantiated health claims or suggest that IFCR has endorsed a product or service. Any links to another’s site is provided with an indication of that sponsor information as a web-link. Sponsors do not contribute to or influence the health information or any other content of the IFCR website or any IFCR communication. Any information given to sponsors by IFCR is bound by the IFCR Privacy Policy.

MISCELLANEOUS

Government Regulations. Member will not export, re-export, transfer, or make available, whether directly or indirectly, any regulated item or information to anyone outside the U.S. in connection with this Agreement without first complying with all export control laws and regulations which may be imposed by the U.S. Government and any country or organization of nations within whose jurisdiction Customer operates or does business.

Governing Jurisdiction. This Agreement will be governed by and construed in accordance with the laws of the United States of America, without regard to any principals of conflicts of law. You agree that any action at law or in equity that arises out of or relates to this Website or these Terms & Conditions of Use will be filed only in the state or federal courts located in Summit County, Ohio, and you hereby consent and submit to the personal jurisdiction of such courts for the purposes of litigating any such action.

Compliance with Laws and International Use. You assume all knowledge of applicable law and are responsible for compliance with any such laws. You may not use our website or services in any way that violates applicable state, federal, or international laws, regulations or other government requirements.

Furthermore, we make no representation that materials on this Website are appropriate or available for use in locations outside the United States, and accessing them from territories where their contents are illegal is prohibited. Those who choose to access this Website from other locations outside of the United States do so on their own initiative and at their own risk and are responsible for compliance with those local laws and regulations.

Severability. If any provision of this Agreement is held to be invalid or unenforceable under the circumstances, such provision’s application in any other circumstances and the remaining provisions of this Agreement shall not be affected thereby.

Waiver. No failure or delay on the part of IFCR in exercising any right hereunder, irrespective of the length of time for which such failure or delay shall continue, will operate as a waiver of, or impair, any such right. No single or partial exercise of any right hereunder shall preclude IFCR of further exercise thereof or the exercise of any other right. No waiver of any right hereunder will be effective unless given in a signed writing.

© Copyright 2017, International Foundation for CDKL5 Research and CDKL5.com. All Rights Reserved.

 


Privacy Policy

Website Privacy Statement
International Foundation for CDKL5 Research
&  CDKL5.com

This document was last updated January 2017.

1. ONLINE PRIVACY STATEMENT

This Privacy Statement describes the online information collection and use practices of the web site operated by the International Foundation for CDKL5 Research (“IFCR”) and its legal divisions and business affiliates at which this Privacy Statement is posted, which includes but is not limited to the following web site: CDKL5.com. This Privacy Statement does not in any way describe IFCR’s offline information collection and use practices, or the practices IFCR employs when collecting information online through means other than the above listed website. An example of such additional information collection practices include but are not limited to you as a user sending CDKL5.com or any website an email message. “We” or “us” or “our” or “CDKL5.com” refers to IFCR and its affiliates.

2. CHILDREN’S ONLINE PRIVACY “COPPA” INFORMATION

The following explains our practices with respect to the online collection and use of personal information from children under the age of 13, and provides important information on your rights under federal law with respect to such information:
We do NOT knowingly collect personally identifiable information from children under the age of 13. We screen users who wish to provide personal information in order to prevent users under the age of 13 from providing such information. If we become aware that we have inadvertently received personally identifiable information from a user under the age of 13, we will immediately delete such information from our records. If we change our collection practices in the future, we will obtain prior, verifiable parental consent before collecting any personally identifiable information from children under the age of 13. If at any time we establish or begin providing services on any website that in anyway meets the criteria of COPPA we will ensure that full compliance is met in every aspect of COPPA.
Due to the fact we do NOT collect any personally identifiable information from children under the age of 13 we also do NOT knowingly distribute such information to any third parties.
We do NOT knowingly allow children under the age of 13 to become Members, post or otherwise distribute personally identifiable contact information.
Due to the fact we do NOT collect any personally identifiable information from children under the age of 13, we do NOT condition the participation in any online activities of a child under the age of 13 on providing personally identifiable information. However, even as outlined above we do NOT knowingly allow children under the age of 13 to access and use CDKL5.com in general.

3. ACKNOWLEDGEMENT AND ACCEPTANCE OF TERMS

IFCR, its divisions and affiliates are committed to protecting your privacy. This Privacy Statement is current as of updated date listed above and sets forth our current privacy practices with regard to the information we collect when you or your computer interacts with our website(s). By accessing CDKL5.com or any affiliates or divisions, you as the end user viewing this information and/or website acknowledge and fully understand IFCR’s Privacy Statement and freely consent to the information collection and use practices described in this Privacy Statement. If IFCR makes any substantive changes to this Privacy Statement we will announce it on our web sites and revise the current date listed. If you have provided us with contact information we will send you a notice to the email address we have on file for you. IFCR will not be responsible for inaccurate or out dated email addresses when supplying Privacy Statement updates. If you have any questions or concerns regarding this policy contact us at info@CDKL5.com. Once the changes have been made, your continued use and/or access of the website will constitute your acceptance and consent to the information collection and use practices described in the revised Privacy Statement.

4. PARTICIPATING ADVERTISER AND MERCHANT POLICIES

The CDKL5.com website may contain links to web sites owned and operated by unaffiliated third parties. These links are provided as a service to you as a user of our website and do not constitute IFCR’s endorsement or support of the third party web sites or the information contained within the third party web sites. Related services and offerings with links from this website, have their own privacy statements that can be viewed by clicking on the corresponding links within each respective website. Unaffiliated third parties who provide information and links through the CDKL5.com website are encouraged to participate in industry privacy initiatives and to take a responsible attitude towards user privacy. However, since we do not have direct control over the policies or practices of participating merchants and other third parties, we are not responsible for and do not endorse the privacy practices or contents of those sites. We recommend and encourage that you always review the privacy policies of any advertisers, merchants and other third parties before you provide any personal information or complete any transaction with such parties. Please contact each third party provider directly if you have any questions about their privacy policies or the information they require for you to complete any transaction.

5. INFORMATION WE COLLECT AND HOW WE USE IT

IFCR collects certain information from and about its users and/or Members, subject to the provisions as outlined in Section 2 above, in the following ways which include but are not limited to: directly from our Web Server logs, the User/Member, and with Cookies. IFCR also collects information volunteered by you in several areas, including sign up pages, site registrations, and web site surveys. Certain information we request for you to participate in certain features within the website(s) may include but not be limited to personally identifiable information such as name, address, telephone and fax numbers, email address, credit card information, as well as “demographic” information such as your hobbies or personal preferences. We will at all times inform you at the time we collect information whether the information requested is necessary for you to participate in a particular feature on the website(s).

Visitors to our website may be able to purchase certain goods or services or provide a donation to IFCR. If you are purchasing a good or service, or making a donation to IFCR, we will request certain financial information. Any financial information we collect will be used only to bill you for the goods or services you agreed to purchase, or charge you for your agreed donation as authorized by you. If a payment or donation is made by credit card, this information may be forwarded to your credit card provider. IFCR also shall provide an on-line donation payment option at CDKL5.com, this option is embedded in the website, as a Level 1 PCI service provider and payment gateway, provided by Blackbaud Merchant Services, meeting the industry’s toughest data security standards—providing the highest level of protection. IFCR is in no way affiliated with Blackbaud Merchant Services or its entities or assigns and makes no claim regarding the same. Users who donate through Blackbaud Merchant Services do so upon the terms and conditions and agreements as outlined by Blackbaud Merchant Services and such donations are subject to those terms & conditions.

We will not disclose personally identifiable information we collect from you to third parties without your permission except to the extent necessary including but not limited to the following:

  • To fulfill your service or payment requests for goods or services or donation authorizations
  • To respond to legal process including a court order or comply with federal, state or local law
  • In connection with a merger, acquisition, or liquidation of IFCR or its affiliates and divisions

The information collected may also be used to respond to specific requests by you including sending you periodic information and special offers from IFCR or CDKL5.com or its affiliates and our sponsors and/or advertisers, to provide you with updates on offerings and features, to provide you with product information from organizations or affiliates in CDKL5.com database, to provide notice of changes to Terms of Use and Privacy Statement and to provide our sponsors and advertisers with data about our users. The information provided by you may also be used to better understand users’ interests and usage behavior, and may be collected and/or combined with information from affiliates of IFCR either online or offline sources.

a. Use of Cookies, Web Server Logs and other electronic information collection mechanisms.

When you visit our Website(s), we may track information to administer the site and analyze its usage. Examples of information we may track include:

  • Your computer’s Internet protocol address or IP address.
  • The kind of web browser or computer you use.
  • Number and type of links you click within the site.
  • Locality including the state or country from which you accessed the site.
  • Date and time of your visit(s).
  • Name of your Internet service provider.
  • Web page you linked to our site from.
  • Pages you viewed on the site.

IP addresses are collected for system administration purposes and for use in studying how people use our site(s) and how IFCR can improve the use of the site. IFCR may use cookies to personalize or enhance your user experience. A cookie is a small text file that is placed on your hard disk by a Web page server. Cookies cannot be used to run programs or deliver viruses to your computer. Cookies are uniquely assigned to you, and can only be read by a Web Server in the domain that issued the cookie to you.

One of the primary purposes of cookies is to provide a convenience feature to save you time. For example, if you personalize a web page, or navigate within a site, a cookie helps the site to recall your specific information on subsequent visits. Hence, this simplifies the process of delivering relevant content and eases site navigation by providing and saving your preferences and login information as well as providing personalized functionality.

IFCR may use cookies to identify registered web site Members and to automatically give them access to “member or registered only” content areas such as “Debt Posting”, forum and blog areas, articles, reports and to provide Members with access to previously stored information. IFCR may also use cookies to estimate our audience size and usage patterns and to track the aggregate number of member or user or visitor returns at our web site(s). IFCR may also use cookies to simplify certain processes on the website(s) including but not limited to the filing out of certain forms and requests to manufacturers or sponsors in our database.

IFCR in its sole capacity reserves the right to share aggregated site statistics with partner or affiliated companies, but does not allow other third party companies to place cookies on our website(s) unless there is a temporary, overriding Member value (such as merging a site that relies on third-party cookies into CDKL5.com).

You have the ability to accept or decline cookies by changing certain settings of your web browser. Most Web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies. If you reject cookies by changing your browser settings then be aware that this may disable some of the functionality on our Website.

6. USE OF WEB BEACONS OR GIF FILES

CDKL5.com Web pages may contain electronic images known as Web beacons – sometimes also called single-pixel gifs or gif files – that allows IFCR to count users who have visited those pages and to deliver co-branded services. IFCR reserves the right to include Web beacons in promotional e-mail messages or newsletters in order to determine whether messages have been opened and acted upon.

Some of these Web beacons may be placed by third party service providers to help determine the effectiveness of our advertising campaigns or email communications. These Web beacons may be used by these third party service providers to place a persistent cookie on your computer. This allows the service provider to recognize your computer each time you visit certain pages or emails and compile anonymous information in relation to those page views, which in turn enables us and our third party service providers to learn which advertisements and emails bring you to our website and how you use the site. IFCR and its affiliates prohibit Web beacons from being used to collect or access any user or member personal information.

7. ACCESSING WEB ACCOUNT INFORMATION

We will provide you with the means to ensure that personally identifiable information in your web account file is correct and current. You may review this information by contacting us by sending an email to us at – IFCR@CDKL5.com.

8. CHANGES TO THIS PRIVACY STATEMENT

As previously stated, IFCR has the discretion to update this privacy statement at any time. When we do, we will also revise the “updated” date at the top of this Privacy page. We encourage you to periodically review this privacy statement to stay informed about how we are helping to protect the information we collect. If you have provided us with contact information we will send you a notice to the email address we have on file for you. IFCR will not be responsible for inaccurate or out dated email addresses when supplying Privacy Statement updates. If you have any questions or concerns regarding this policy contact us at IFCR@CDKL5.com. Once the changes have been made, your continued use and/or access of the website will constitute your acceptance and consent to the information collection and use practices described in the revised Privacy Statement.

9. CONTACTING US

If you have questions regarding this Privacy Statement, its implementation, failure to adhere to this Privacy Statement and/or the general practices of IFCR and/or CDKL5.com and its affiliates, please contact us at IFCR@CDKL5.com or send your comments to:

International Foundation for CDKL5 Research
Attention: Privacy Statement Personal
P.O. Box 926
Wadsworth, Ohio 44282

International Foundation for CDKL5 Research will use commercially reasonable efforts to promptly respond and resolve any problem or question.

© Copyright 2017, International Foundation for CDKL5 Research. All Rights Reserved.