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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.  

https://www.blackbaud.com/files/resources/downloads/BBMS.CreditCardProcessing.datasheet.pdf


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.
© 2017