International Foundation for CDKL5 Research (“IFCR”) values your privacy.
This Privacy Statement of the International Foundation for CDKL5 Research (“IFCR” “CDKL5.COM” “we” “us” or “our”) outlines how your personally identifiable information (“PII) and other personal data (your “User information”) will be collected, used, and shared in connection with your access to and/or use of CDKL5.COM and/or application and any content, features, services, or other offerings that IFCR may provide in connection therewith (collectively the application and any affiliate website shall be referred to as, the “Site”), as well as what information about you we collect through any third party application or third party sites, social network or social media sites (such as Facebook, Instagram, Twitter, Google, etc.) (collectively the “Applications”). This Privacy Statement also describes your choices and rights regarding the use, access and correction or deletion of your User information. By using the Site, you consent to the use of your User information in accordance with this Privacy Statement. You will also be asked to provide clear and unequivocal affirmative consent to the collection, processing, and sharing of your User information via cookies and similar technologies. The Site is owned and operated by IFCR.
This Privacy Statement and its enumerated policies are intended to comply with Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 (the “General Data Protection Regulation” or “GDPR”) and provide appropriate protection and care with respect to the treatment of all of our User’s information in accordance with GDPR.
Summary of Terms
To enhance, personalize, and support your experience on the Site, among other things, we collect, use, and share your User information. For example, we use aggregated information to develop content targeted to User interests and to generally improve the Site’s User experience. As detailed below, your User information may also be used by IFCR and its partners to tailor content and ads, provide social media features (e.g., features that allow you to share content directly to your preferred social media platform), track your preferences, analyze traffic, and provide similar services and content. IFCR is committed to your privacy and will not share any User information with any third party without your consent, except as outlined in this Privacy Statement or as permitted by law. If you have any requests, comments, or questions about this Privacy Statement or your User information, please contact us in the manner provided below.
Children’s Online Privacy Information
The Site is intended for people who are at least 18 years of age.
If you are less than 18 years old, please do not send any User information to us–including information such as your name, address, or e-mail address. We do not knowingly collect (nor do we wish to collect) any PII or other User information from children under the age of 18. In the event that we learn we have collected any personal information from a child under the age of 18, we will delete that information from our database and terminate the corresponding account, if any. We encourage you to discuss the Site with your parent or guardian.
If we change our collection practices in the future, we will obtain prior, verifiable parental consent before collecting any -PII from children. If at any time we establish or begin providing services on the Site that in anyway meets the criteria of Children’s Online Privacy Protection Act (“COPPA”) we will ensure that full compliance is met in every aspect of COPPA.
Due to the fact we do NOT collect any PII from children under the age of 18 we also do NOT knowingly distribute such information to any third parties.
We do NOT knowingly allow children under the age of 18 to become customers, access and use the Site in general, or otherwise distribute personally identifiable contact information.
Third Party Policies
This Privacy Statement covers this Site. IFCR may contain links to unaffiliated third parties. These links are provided as a service to you as a user and do not constitute IFCR’s endorsement or support of the third party or the information or content contained within the third party site. Related services and offerings with links from this Site have their own privacy statements that can be viewed by clicking on the corresponding links within each respective site. Unaffiliated third parties who provide information and links through IFCR are encouraged to participate in industry privacy initiatives and to take a responsible attitude towards privacy. However, since we do not have direct control over the policies or practices of participating third parties, we are not responsible for and do not endorse the privacy practices or content of those sites. We recommend and encourage that you always review the privacy policies of any 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.
Google Analytics (“Google”) services are being used with this Site which transmit website traffic data to Google servers in the United States as well as may provide targeted advertising features. Google does not collect PII or associate your IP address with any other data held by Google. We do not share any PII with Google in connection with their performing of any services on the Site. We use reports provided by Google to help us understand website traffic and webpage usage. You may opt out by installing the Google Analytics opt out browser add on found here. Furthermore, if you do not want to use any remarketing advertising feature from Google on this Site you can disable it by changing the appropriate settings within Google Ad Settings Manager found here.
General Information We Collect and How We Use It
Section Overview: We collect User information when you use the Site. Sometimes you may submit it to us yourself, other times it may be collected automatically. You can manage and change your preferences as outlined below.
When you use the Site, your User information may be collected, used, and shared in a variety of manners. As detailed below, the type of User information collected may vary based on how it was gathered, but may include, among other things, your name, email address, limited biological health, and other information that you voluntarily submit (e.g., when setting up an account or submitting a registration or application on the Site, you may submit your contact information and/or other related information), information automatically collected about your usage of the Site which does not include PII (e.g., the content that you choose to view, how you interact, projects you view), and information about you that third parties may share with us if such third parties have previously received your consent to do so.
IFCR does not collect or process any data based upon the following: Race or ethnic origin; political opinions; religious or philosophical beliefs; trade union memberships; identifiable genetic or biometric data; identifiable health or mortality; sexual orientation.
IFCR may collect User information that is voluntarily provided by you or with your permission. For example, we may ask you for information, such as your e-mail address, when you register to become a User of the Site. In the event you transact any business, we may request additional information, such as your address, telephone number and billing or credit information, in order to complete the transaction. You always have the option not to provide the information we request. If you choose not to provide the information we request, you can still visit the Site, but you may be unable to access certain options and services. When you register or become a User of the Site or provide information to IFCR in any other manner, you agree to provide only true, accurate, current and complete information.
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 and 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 and conditions.
When you use our services we may collect information about your location. With your permission, we may also collect information about your precise location using methods that include GPS, wireless networks, cell towers, Wi-Fi access points, and other sensors, such as gyroscopes, accelerometers, and compasses.
A cookie is a small data file that is written to your device by a web browser. A cookie file can contain and/or automatically collect information, such as a User identification code or IP address that a website will use to track the pages and number of times you have visited. The data read from these cookies may be linked (PII) and non-personally identifying (non-PII) information.
Cookies fall into the subcategories below.
Essential Cookies. Certain cookies are used for specific purposes that are essential to your secure use and navigation of the Site. Without them, IFCR may not be able to provide core Site functions and features to you, and the Site would not operate as well as you or IFCR would like. These cookies collect and use information such as your server preferences, single-session data and corresponding identifier, web beacons and log files (detailed below), and other credential-related information. Essential cookies also help inform IFCR whether you require, or have already been served, an affirmative consent request in connection with our data policies. Essential cookies also include analytics cookies, which provide us data that allows IFCR to better understand its Users and improve the Site based on what we have learned from that data.
Preference Cookies. Other cookies are used to collect and process information about your preferences and similar choices in connection with the Site in order to optimize your browsing experience. Preference cookies include social media cookies, which collect information about your social media usage and other data you may have provided in connection with such usage (if you access the Site through a social media website or mobile application, you may have social media cookies). If you wish to modify or change your social media cookies, please visit and review the settings related to your applicable social media account(s).
NOTE: You have the ability to accept or decline cookies by changing certain settings of your web browser. Most web browsers automatically accept cookies, but generally allow Users to modify their browser settings to display a warning before accepting a cookie, to accept cookies only from certain websites, and/or to refuse all cookies. We encourage you to consider keeping your cookies enabled, as if you choose to disable cookies from our Site, you may not be able to use or benefit from certain features of the Site, particularly the features that are designed to personalize your experience.
If you would like to manage your cookie preferences or learn more information about this practice and your right to decline (or opt-out of) cookies placed by some or all of these companies, please contact us as outlined below.
IFCR may contain electronic images known as web beacons (invisible images often referred to as pixel tags or clear GIFs) on our Site in order to recognize Users, assess traffic patterns, identify preferred content and measure Site engagement. We may also include web beacons in our e-mail messages, including newsletters, in order to count how many e-mail messages have been opened.
Some of these web beacons may also be placed by third party service providers or Applications to help determine the effectiveness of advertising campaigns. These web beacons may be used by third party service providers to place a persistent cookie on your device. This allows the service provider to recognize your device 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 Site and how you use the Site.
IFCR and its partners (including Google) also may use web beacons to collect various data provided by your browser while you are on our Site and elsewhere (i.e., outside of the Site) where we may be acting as a 3rd party. This data is collected in the aggregate, but may include or be associated with other non-PII or PII that Users have voluntarily submitted.
The Site’s web and ad servers log information about a User’s IP address, browser type and the current URL the User is requesting. This information is always provided by a User’s browser and automatically logged. These log files are stored in a secure location and used in our internal analysis of traffic patterns.
Use of Your Information
Our primary goal in collecting, using, and sharing User information is to enhance your experience on IFCR, support the Site, and improve its features, performance, and other elements. Your User information may be used for the purposes outlined below. We will not use your User information without a valid legal basis to do so.
To Target Content
To develop content to you that is targeted to your interests, we use the analytics collected by the systems described above to determine which areas of IFCR you prefer based upon the frequency of your visits and engagement with those areas. We may make reasonable assumptions based on your browser provided data to target relevant content to you on IFCR. We may also make reasonable geographic and demographic assumptions based on your presented IP address to target relevant content.
To Provide Interactive Communications
To enhance your experience we may provide you with interactive communications, such as notifications of activity by topic or contributor to the e-mail address or mobile number that you provide to us. Such interactive communications are provided only to those Users who have expressly provided us with their permission to receive them as part of their User profile.
From time to time we may provide e-mails or text messages highlighting new features, promotions or content on IFCR to those Users who have expressly provided us with their permission to send such communications as part of their User profile.
To Provide Communications from Third Parties
We respect the privacy of our Users and will not disclose or distribute our User list to any third party, nor will we permit anyone else to do so. However, we do make available our list of those registrants who have expressly provided their permission to receive third party offers as part of their User profile. In those cases, your e-mail address and/or mobile number will be transferred to the third party. You can remove your consent to this use or modify your related User information by contacting IFCR as indicated below.
Sharing of Information
You may be requested to voluntarily provide certain User information during your use of the Site. If you choose to do so, that User information may be shared with IFCR as well as business partners and vendors providing hosting and other services for IFCR.
We use third parties to provide credit processing, data analysis, e-mail service providers, messaging providers, and hosting services on IFCR. When you sign up for services, we will share your User information only as necessary for the third party to provide that service. These third parties are prohibited from using your User information for any other purpose. With respect to credit processing, we do not collect, store, or process any credit information. If you do not want your information to be shared, you can choose not to allow the transfer of your information by not using that particular service.
In addition, if you provide any personally identifiable information via an advertiser promotion, please be aware you are directly providing your PII to that advertiser and not to IFCR.
As Necessary to Provide Services to You
We may occasionally hire other companies to provide limited services on our behalf, such as handling the processing and delivery of newsletter mailings, processing certain transactions, or performing statistical analysis of our services. We will only provide those companies the information they need to deliver the service. In some instances, these companies may collect information directly from you. In these cases, you will be notified of the involvement of the external service provider. In all cases, these companies are subject to agreements that require them to maintain the confidentiality of your information and they are prohibited from using that information for any other purpose.
In the Event of Sale or Bankruptcy
The ownership of IFCR may change at some point in the future. Should that occur, we want IFCR to be able to maintain a relationship with you. In the event of a sale, merger, bankruptcy or other change in control of IFCR, your information may be shared with the person or business that owns or controls this Site. Opting out of receiving information from third parties will not affect our right to transfer your information to a new owner, but your choices will continue to be respected regarding the use of your information. You will be notified as described below in “Changes to Privacy Statement.”
As Required By Law
IFCR may disclose your personal information if required to do so by law such as to comply with a subpoena or in the good faith belief that such action is necessary to conform to the edicts of the law, protect your safety or the safety of others, investigate fraud or comply with a judicial proceeding, court order or legal process served on IFCR or to protect and defend the rights or property of IFCR.
IFCR will not process your User information without a lawful basis to do so. In general, IFCR will process your User information on the legal bases of consent, contract (if you have entered into an agreement with us and such processing is a necessary part thereof), or legal obligation (as noted above). IFCR may also process certain User information on the basis of the following legitimate interests, provided that such interests are not overridden by your privacy rights and interests: delivering and continuing to develop and improve the Site, learning from your behavior on the Site (e.g., analyzing traffic) to better serve you and other Site Users, helping us modify or enhance the Site and its content, receiving insight as to what Users do (and don’t) like about our Site or aspects thereof, and providing a stable, consistent, and secure user experience in connection with the Site.
Accounts and Access
IFCR allows you to create a User account to make using our services easier. You can create an account through IFCR at any time by providing certain required information including your name, email address, possibly certain financial information (credit card/bank), company information/affiliation and creating a unique password. This will allow some of your information as outlined above to be stored for future use at the Site.
How we Protect Your Information
IFCR may store and process PII collected on our Site on our own servers or on the servers of our business partners. Paper copies containing all or part of the PII you supply to us may be made and kept in file cabinets as part of the course of normal business activity. To prevent unauthorized access, maintain data accuracy, and ensure the correct use of information, we have put in place appropriate physical, electronic, and managerial procedures to safeguard and secure the information we collect. We use secure online certificates for our domain. When entering personal information, look for the secure icon and https designation in the address box of your browser window that indicates you are on a secure page. We take appropriate security measures to protect against unauthorized access to or unauthorized alteration, disclosure or destruction of data. We restrict access to your PII to employees who need to know that information in order to perform their jobs and provide service to you.
We care about the protection of your User information and use industry standard safeguards to do so. Of course, it’s important to keep in mind that no data transmission on the Internet is guaranteed to be 100% secure.
Your information is stored on servers located in the United States. We use industry standard physical, electronic, and organizational safeguards to protect your User information against loss or theft as well as unauthorized access and disclosure to protect your privacy. We employ many different security techniques to protect such data from unauthorized access by Users inside and outside the company. However, it must be noted that “perfect security” does not exist on the Internet. If you are concerned that your privacy may have been breached, please contact us as provided below.
How Can You Verify Your Information
You may check your information to verify, update, or correct it, and to have any obsolete information removed. If you have an account on our Site, you can access and change your profile yourself. You may ask to review any of your information that we have retained, how we have used it, and to whom we have disclosed it at any time by contacting us as indicated below under “Contacting Data Controller”. Subject to exceptions prescribed by law, and provided we can authenticate your identity, you will be given reasonable access to your personal information, and will be entitled to have it amended as appropriate. You may ask us to change your preferences regarding how we use or disclose your information, or let us know you do not wish to receive any further communication from us.
Changes to Privacy Statement
If we make any material changes we will notify you by email (sent to the e-mail address specified in your account) or by means of a notice on this website prior to the change becoming effective. We encourage you to periodically review this page for the latest information on our privacy practices and to review our most current privacy statement.
Contacting Data Controller
If you have any questions regarding this Privacy Statement or how to remove or modify your User information or related consents, please feel free to contact us by e-mail at PRIVACY@CDKL5.com or the mailing address below. Our mailing address is:
International Foundation for CDKL5 Research
Attention: Data Controller
P.O. Box 926
Wadsworth, Ohio 44282
IFCR will use commercially reasonable efforts to promptly respond and resolve any problem or question.
© Copyright 2019. International Foundation for CDKL5 Research. All Rights Reserved.