Policies & Procedures
Terms & Conditions
Thank you for visiting our site. In this Terms & Conditions of Use Agreement (the “Agreement”), “IFCR”, “we”, “our” or “us” refers to International Foundation for CDKL5 Research, an Ohio non-profit corporation, CDKL5.com, and its affiliates. IFCR and its affiliates provide services and use of the website CDKL5.com (the “site”) to you (the “User”) subject to the following terms and conditions.
PLEASE READ THE ENTIRE TERMS & CONDITIONS OF USE CAREFULLY BEFORE YOU ACCESS OR USE THE SITE. IF YOU DO NOT AGREE TO ALL THE TERMS & CONDITIONS SET FORTH HEREIN YOU MAY NOT USE THE SITE OR ANY OF IFCR’S SERVICES OR RESEARCH FINDINGS. BY CONTINUING, YOU ARE DEEMED TO HAVE ACCEPTED THESE TERMS & CONDITIONS OF USE IN THEIR ENTIRETY.
YOU MUST BE AT LEAST 18 YEARS OLD TO ACCESS AND USE THE SITE 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.
By accessing and using the site you agree to these terms and conditions. A User is defined as any visitor including both registered and unregistered visitors (all visitors have the ability to browse the site, including through a mobile device). Certain areas or features of the site may be restricted to Users who have obtained an ID and password by completing a registration process. Please be sure to protect and maintain the confidentiality of any information you may obtain in connection with your use of the site. You agree to notify IFCR immediately if you believe your ID, password or other identifying information has been lost, stolen or otherwise compromised. If you do not agree to the terms and conditions of this Agreement, you should immediately discontinue use or viewing of the site.
We reserve the right, at any time, to modify, alter, or update the terms and conditions of this Agreement. 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 the site prior to the change becoming effective. We encourage you to periodically review this page for the latest information on our terms and to review our most current terms.
Modifications shall become effective immediately upon being posted at the site. Your continued use of the site after amendments are posted constitutes acknowledgment and acceptance of the terms. Except as provided in this paragraph, this Agreement may not be amended.
IFCR may refuse to offer or continue offering services to any person or entity for any reason or no reason and may change its eligibility criteria from time to time.
1.0 DESCRIPTION OF SERVICE – LIMITED USE LICENSE AGREEMENT
International Foundation for CDKL5 Research is a non-profit focused on being the leader in CDKL5 patient education in the English-speaking world. Our site give families living with CDKL5 deficiency disorder the information and resources they need to help their affected loved one. We also partner with CDKL5 organizations around the world to adapt our guides to the educational and medical processes of their own countries. CDKL5.com is a complimentary information service website dedicated to anyone affected by CDKL5 and to finding a cure for CDKL5. CDKL5.com allows Users 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.
By accessing and using the site and its features you are licensed to use the Content only for the purpose of requesting services or researching information on this site. The downloading of the whole or significant portions of any content or database is strictly prohibited. Resale of any Content or database or portion thereof, is also prohibited. Violation of this License Agreement may result in legal action being taken against you.
2.0 REGISTRATION PROCESS
To become a Registered User, the User must complete the registration process by providing IFCR (or its service providers) with current, complete and accurate information, as more specifically required by the registration procedures. By way of illustration and not limitation: to register, a prospective User may be required to specify a username and password, and to provide a name, address, zip code, legitimate electronic mail address and certain additional information (for example, preferred contact method); in order to use certain aspects of the service, Users may also elect to provide access information related to accounts at social networking websites (such as, Facebook, Twitter, Instagram, LinkedIn); and in order to make purchases Users may be required to provide information about authorized payment methods.
Each User shall maintain and update their registration profile data, to ensure that it is always current, complete and accurate. At its sole discretion, IFCR may refuse to accept any User’s registration for any reason.
Upon acceptance, IFCR will provide access credentials to the registered User. Each User will be solely liable for any and all activities under User’s account. Multiple User accounts are prohibited. Any individual User may only register for and maintain one (1) account.
3.0 PROPRIETARY RIGHTS TO CONTENT
You acknowledge and agree that the 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 copyright, trademark, 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 by IFCR on the site and all software, data and information used to create the site and the Content, including text and images, logos, method of display and presentation, source code, object 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 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 as authorized hereunder.
YOU EXPRESSLY UNDERSTAND AND AGREE THAT:
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 REQUIREMENTS, (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.
THE INFORMATION THAT IS PROVIDED ON THIS SITE 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.
The IFCR website does not contain medical advice. The contents of this site are not intended to substitute for professional medical advice, diagnosis or treatment. Although efforts are taken to keep any medical information on the site updated, we cannot guarantee that the information reflects the most up-to-date medical research. The contents of this site, 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 this site. 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, or opinion. 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 clearinghouse, 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
5.0 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 THE SITE or the information contained in it, OR RESULTING FROM UNAUTHORIZED ACCESS TO OR ALTERATION OF YOUR TRANSMISSIONS OF DATA PROVIDED BY YOU, 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.
6.0 WAIVER OF JURY TRIAL
IFCR ALONG WITH ANY USER HEREBY IRREVOCABLY WAIVES ANY AND ALL RIGHT TO TRIAL BY JURY IN ANY LEGAL PROCEEDING ARISING OUT OF OR RELATING TO THIS AGREEMENT OR THE TRANSACTIONS CONTEMPLATED HEREBY.
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 the site, the violation of this Agreement, or infringement by another User, of any intellectual property or any other right of any person or entity who may have gained access to the site by using your ID and password.
8.0 COPPA NOTICE
CHILDREN ONLINE PRIVACY PROTECTION ACT (“COPPA”) NOTIFICATION
***Special Note for Parents or Guardians of Children
This site was not designed for anyone under the age of 18. We are not responsible for any access or use of the site by children or minors under the age of 18. CDKL5.com 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 Statement for more information regarding use of the site and children under the age of 13 and anyone under the age of 18.
9.0 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, U.S. Foreign Corrupt Practices Act and the Arms Export Control Act and not to transfer, by electronic transmission or otherwise, any Content derived from the website to either a foreign national or foreign destination in violation of such laws.
10.0 LEGAL COMPLIANCE
IFCR reserves the right to use any information available by virtue of your use of the site (including, for example, reverse IP address inquiry) in order to comply with any law, to enforce our Agreement or Privacy Statement, or to protect the rights, property or safety of all visitors and users.
By using IFCR, you agree not to generate any content, post, submit or transmit through IFCR any material that violates or infringes in any way upon the rights of others, that is unlawful, threatening, abusive, defamatory, invasive of privacy or publicity rights, vulgar, obscene, profane, misleading, or otherwise objectionable, that encourages conduct that would constitute a criminal offense, give rise to civil liability, damages or otherwise violate any law, treaty, copyright, trademark, or that, without our express prior approval, contains advertising or any solicitation with respect to commercialized products or services.
The sender of any communications to IFCR shall be solely responsible for the content and information contained therein, including its truthfulness and accuracy. By posting content, you represent and warrant that you either own or otherwise control all rights necessary for you to provide post, upload or submit that content. Without limiting the foregoing, you shall be liable for any damage resulting from any infringement of copyrights, proprietary rights, or any other harm resulting from any content or other material submitted by you to IFCR and agree that you will indemnify and hold IFCR harmless from and against any claims, damages or losses related to such content or other material.
We reserve the right to deny access to anyone who violates this Agreement or who, in our judgment, interferes with the ability of others to enjoy the site or infringes in anyway the rights of others. We will comply with the requirements of the law regarding disclosure of any content to others, including law enforcement agencies and court orders.
By submitting communications or materials to IFCR, you grant IFCR, its affiliates and licensees a royalty-free, perpetual, irrevocable, non-exclusive right and license to use, reproduce, modify, adapt, aggregate, translate, publicly display, publicly perform and distribute such material and content (in whole or in part) alone or as incorporated into other works in any form, media, advertising or technology now known or hereafter on a worldwide basis. By disclosing any information, you hereby waive any claim that IFCR misappropriated any such content or materials.
11.0 MODIFICATIONS AND INTERRUPTION TO SERVICE
IFCR reserves the right to modify or discontinue any services with or without notice. IFCR shall not be liable to a User or any third party should IFCR exercise its right to modify or discontinue any service. Each User acknowledges and accepts that IFCR does not guarantee continuous, uninterrupted or secure access to the site and operation of the site may be interfered with or adversely affected by numerous factors or circumstances outside of our operation or control.
12.0 SERVICE DISCLAIMER INFORMATION
IFCR disclaims liability for any products, sales or transactions related to third parties or affiliates and obtained through any posting, listing or link via IFCR.
Users agree to indemnify, hold harmless, and defend IFCR AND ITS STAFF, AGENTS AND OFFICERS (hereinafter referred to as “IFCR Parties”) from any and all fault, liabilities, costs, expenses, claims, and demands or lawsuits arising out of, related to or connected with this Agreement or the site.
13.0 THIRD-PARTY LINKS
IFCR may include links to online merchants, vendors, suppliers, manufacturers, material men, contractors, subcontractors, service providers and/or other third parties (collectively referred to as “Vendor(s)”). Any such links to Vendors are provided for your convenience only, and such links do not imply endorsement by IFCR of such Vendors or the content contained therein. You acknowledge that we are not responsible for the availability of, or the content located on or through, any Vendors. You should contact those Vendors if you have any concerns regarding such links or the content. Your use of Vendors is subject to the terms & conditions of use and privacy policies of each Vendor. We encourage all Users to review said policies of all Vendors.
14.0 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. Any and all services and rights of use hereunder are considered performed in the State of Ohio, United States and you agree that any action at law or in equity that arises out of or relates to IFCR or these Terms & Conditions of Use will be filed only in the state or federal courts located in Medina County, Ohio and the Federal Northern District of Ohio, and you hereby consent and submit to the personal jurisdiction of such courts for the purposes of litigating any such action.
15.0 COMPLIANCE WITH LAWS AND INTERNATIONAL USE
You assume all knowledge of applicable laws and are responsible for compliance with any such laws. You may not use the site in any way that violates applicable state, federal, or international laws, regulations or other government requirements.
Furthermore, we make no representation that materials or services on the site are appropriate or available for use in locations outside the United States, and accessing them from territories where their content is illegal is prohibited. Those who choose to access the site 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. Please see actual regulations for more information.
16.0 COPYRIGHT, TRADEMARK AND SERVICE MARK INFORMATION
All Content included or available on the site, including design elements, text, graphics, interfaces, and the selection and arrangements thereof is the property of IFCR with all rights reserved, or is the property of third parties protected by intellectual property rights. Any use of materials on the site, 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 agree that they will not use any robot, spider, or other automatic device, or manual process to monitor or copy IFCR or any content.
International Foundation for CDKL5 Research™ is a proprietary mark of IFCR whose 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 Users, or in any manner that disparages or discredits IFCR.
All other trademarks displayed on the site are the trademarks of their respective owners and may only be used with the permission of the particular owner. Trademarks constitute neither an endorsement nor a recommendation. In addition, such use of trademarks or links to Vendors is not intended to imply, directly or indirectly, that those Vendors endorse or have any affiliation with IFCR.
17.0 NOTIFICATION OF CLAIMED COPYRIGHT INFRINGEMENT
We respect the intellectual property of others and we ask our Users to do the same. If you believe that your work has been copied and is accessible on the site in a way that constitutes copyright infringement, you may notify us by providing our copyright agent the following information:
- A description of the copyrighted work that you claim has been infringed;
- Identification of the URL or other specific location on the site where the material you claim is infringing is located;
- Your name, address, telephone number, email address, and statement that you are an authorized person to act on behalf of the owner of the copyright;
- 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;
- 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.
International Foundation for CDKL5 Research
Attention: Copyright Notice Dept.
P.O. Box 926
Wadsworth, Ohio 44282
By Email: firstname.lastname@example.org
IFCR retains the right, at our sole discretion, to terminate any User 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.
Use of the site by you for spamming is strictly prohibited.
20.0 MISCELLANEOUS TERMS
This Agreement constitutes the entire understanding between you and us, superseding any prior agreements and understandings, and governs your use of the site. 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 shall not constitute a waiver of such right or provision. If any provision of this Agreement 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 this Agreement and any other agreements referenced herein, 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 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.
Any rights not expressly granted herein are reserved by and for us.
Your communications with IFCR may be recorded or monitored and by using such communications methods you are consenting to the recording or monitoring of the same.
By submitting information to IFCR through the site or otherwise you are making an inquiry as to services offered by IFCR and give IFCR permission to contact you through Email, fax, telephone, mobile phone, or any means, even if your phone number or mobile number is on a “Do Not Call” list.
Certain sections or pages on the site may contain separate terms and conditions, which are in addition to this Agreement. 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.
IFCR will use commercially reasonable efforts to promptly respond and resolve any problem or question.
Corporate Relations Policy
The International Foundation for CDKL5 Research (IFCR) will enter corporate relationships for the sole purpose of providing mission-related benefits to its constituents and the CDKL5 community. The IFCR will not accept any corporate donation or enter any corporate relationship that would create a conflict of interest, or even its appearance, with the IFCR’s mission, sound science, or board-approved policies. All procedures and formal agreements with corporate donors will be designed to prevent any undue influence upon the IFCR.
The IFCR will perform appropriate and adequate due diligence, with respect to all corporate donors, to ensure that the company’s activities, affiliations and business practices do not compromise the IFCR’s mission.
In all relations with external organizations, the International Foundation for CDKL5 Research will act in ways that will only enhance the credibility and professional recognition of the IFCR. IFCR strives to avoid reliance on any particular source of funding, the loss of which could jeopardize the sustainability of programs and services. To ensure that all corporate donations are in alignment with the IFCR’s mission and are always for the sole benefit of the CDKL5 community, the IFCR’s Board of Directors has approved the following guidelines and principles in regard to corporate support.
- Financial and/or in-kind support in the form of grants and/or sponsorships for educational and communications vehicles (i.e., conferences, videos, podcasts, publications and community initiatives).
- Financial and/or in-kind support in the form of grants and/or sponsorships for fundraising purposes.
- Strategic alliances that provide improved services for constituents.
- Cause-related marketing.
- Health message promotion.
- Financial grants and/or professional support for clinical trials and research.
- A vested corporation is one that either makes or offers products/services used by an individual with CDKL5 Disorder .
- IFCR will not endorse any other corporation’s product, service or program.
- IFCR will not lend its name to license products, services or programs of other organizations.
- IFCR will not recognize or certify the quality or standards of a particular company, including its products and services.
- IFCR’s name and logo should not be associated with a specific branded product of an external company. References to the IFCR website, phone number and address for the purposes of referral information are an exception to the above.
- IFCR will not endorse any corporation or product nor will it allow a corporation’s interest to factor into its decision-making process. All unrestricted educational grants received by the IFCR will acknowledge and recognize the contributing corporate donor, not the company’s product (i.e. specific drug).
- In exchange for contributions, the IFCR will allow standard recognition to include, but not be limited to, items such as signage and acknowledgment in IFCR publications. Additional types of recognition will be considered on a case by case basis, based on the type of funding or opportunity presented.
- IFCR will not accept grants that may adversely affect its nonprofit status.
- Revenue generated through corporations will be used to advance the mission of the IFCR in accordance with the strategic plan.
- The IFCR will maintain complete control of the development and implementation of all content and materials related to educational conferences and materials and all research and clinical trials conducted by the IFCR.
- Corporations providing sponsorships for advocacy and research conferences or symposia will not influence conference content or selection of speakers.
- IFCR will maintain control and discretion over all corporate funds received and will ensure compliance with related grant agreements.
As a matter of policy, the IFCR does not disclose its constituent mailing list for external use, nor is the list rented, lent, or shared to benefit constituents.
Programs or services that may be of benefit to our patient community may be shared with constituents, upon the discretion of the Executive Director and/or Board of Directors, in emails and/or newsletters that are distributed by IFCR to our constituent mailing list.
Members of the IFCR Board of Directors and staff, as well as their immediate family, may not own shares of, or otherwise hold a direct financial interest in, any company whose primary focus relates to the diagnosis or treatment of CDKL5 Deficiency. They are permitted to own stock in larger pharmaceutical companies that serve both CDKL5 and broader disease communities.
*Adopted January 2020
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.
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.
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 any way meets the criteria of the 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.
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 transmits 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.
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 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 online 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 the 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.
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 for 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 on 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.
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 with 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.
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.
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 the 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 if you do not wish to receive any further communication from us.
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.
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.
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