Last Updated: December 20, 2018
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Confidentiality of Health Information
Bridge the Gap – SYNGAP Education and Research Foundation (“SYNGAP1 Foundation”) understands that health information about you and your health is personal. We support your privacy and make sure that the transmittal and use of your information comply with all laws. In this regard, we comply with the Health Insurance Portability and Accountability Act of 1996 (“HIPAA”), the Health Information Technology for Economic and Clinical Health Act (“HITECH Act”), and Texas Medical Privacy Act into law. S.B.11 (2001). The Act is designed to bring Texas into compliance with Federal standards on patient privacy as enumerated by the Health Insurance Portability and Accountability Act of 1996 (HIPAA). 65 Fed. Reg. 82,461 (2000)When applicable to ensure that your protected health information is appropriately safeguarded. See http://aspe.os.dhhs.gov/admnsimp/Index.htm
The Texas Medical Privacy Act will also expand the protections mandated by HIPAA in three areas. First, the Act applies to a broader range of entities. Second, the Act does not allow a patient’s health information to be marketed, or to be used in marketing, without that patient’s consent or authorization. Third, the Act prohibits the re-identification of information that has been de-identified.
HIPAA was enacted on August 21, 1996. Title I of the Act deals with health insurance access, portability, and renewability. Title II authorized the Secretary of the Department of Health and Human Services (DHHS) to promulgate final regulations for maintaining the privacy and security of health information if Congress did not enact such legislation within 36 months of HIPAA’s enactment. Congress missed the deadline; therefore, the Secretary issued a final regulation dealing with the security and privacy of protected health information (PHI) on December 20, 2000. The HIPAA Privacy Regulation was formally enacted on April 14, 2001. 45 C.F.R. §§160-164 (2000). See http://aspe.hhs.gov/admnsimp/final/PvcTxt01.htm. On July 6, 2001, the Secretary of the DHHS issued guidelines on the Privacy Regulations. The guidelines clarify the requirements and answer questions about the Regulations. See http://www.hhs.gov/ocr/hipaa/index.html#Initial%20Guidance.
HIPAA is the first federal legislation to initiate uniform privacy standards for patient information. Prior to the enactment of the HIPAA Privacy Regulation, it was up to the states to provide legislation to protect the privacy of patient information. The state laws, however, varied greatly and were often too narrow in their application. See “The State of Health Privacy: An Uneven Terrain,” http://www.healthprivacy.org. HIPAA sets a floor of ground rules for health care providers, health plans, and health care clearinghouses to follow, in order to protect patients and encourage them to seek needed care. It creates a framework of protection that can be strengthened by both the federal government and by states as health information systems continue to evolve. 65 Fed. Reg. at 82,464. HIPAA’s provisions allow existing state laws that are more protective of privacy to stand, and permit states to make more protective laws in the future. 45 C.F.R. §160.203(b)
The Texas Medical Privacy Act is an example of a state law that provides more protection for patient privacy that is provided under HIPAA. The Act adopts the basic tenets of the HIPAA Privacy Standards and provides additional protections for Texans in some areas where HIPAA has left gaps. The following chart is a basic comparison between HIPAA regulations and those of the Texas Medical Privacy Act. The portions in bold describe sections of the Texas Medical Privacy Act that fill a gap left by HIPAA.
Use of Website
Collection of Information
Information You Provide
We collect information you provide, such as when you email us, subscribe to our newsletter, or fill out forms on our website or otherwise. We may collect, but are not limited to collecting, the following information: your name, gender, email address, mailing address, phone number, date of birth, social security number, employer information, doctor information, SYNGAP1 related mutation, and medications and vitamins you are currently taking.
Information We Collect from Your Use of the Website
We collect information about you when you use our website, including, but not limited to the following:
- Device Information. We may automatically collect certain information about the computer or devices (including mobile devices) you use to access the website. For example, we may collect and analyze information such as (a) IP addresses, geolocation information (as described in the next section below), unique device identifiers and other information about your mobile phone or other mobile device(s), browser types, browser language, operating system, the state or country from which you accessed the website; and (b) information related to the ways in which you interact with the website, such as: referring and exit pages and URLs, platform type, the number of clicks, domain names, landing pages, pages and content viewed and the order of those pages, the amount of time spent on particular pages, the date and time you used the website, the frequency of your use of the website, error logs, and other similar information. As described further below, we may use third-party analytics providers and technologies, including cookies and similar tools, to assist in collecting this information.
- Location Information. We may collect different types of information about your location, including general information (e.g., IP address, zip code) and more specific information (e.g., GPS-based functionality on mobile devices used to access the website), and may use that information to customize the website with location-based information, advertising, and features. For example, if your IP address indicates an origin in Los Angeles, the website may be customized with Los Angeles-specific information and advertisements. In order to do this, your location information may be shared with our agents, vendors or advertisers. If you access the website through a mobile device and you do not want your device to provide us with location-tracking information, you can disable the GPS or other location-tracking functions on your device, provided your device allows you to do this. See your device manufacturer’s instructions for further details.
- Cookies and Other Electronic Technologies. We may use the tools outlined below in order to better understand users. As we adopt additional technologies, we may also gather additional information through other methods.
For more information on cookies, visit http://www.allaboutcookies.org.
- Web Beacons: “Web Beacons” (a.k.a. clear GIFs or pixel tags) are tiny graphic image files embedded in a web page or email that may be used to collect anonymous information about your use of our website, the websites of selected advertisers, and the emails, special promotions or newsletters that we send you. The information collected by Web Beacons allows us to analyze how many people are using the website, using the selected advertisers’ websites or opening our emails, and for what purpose, and also allows us to enhance our interest-based advertising.
- Website Analytics: We may use third-party website analytics services in connection with the website, including, for example, to register mouse clicks, mouse movements, scrolling activity, and text that you type into the website or mobile application. These website analytics services generally do not collect personal information unless you voluntarily provide it and generally do not track your browsing habits across websites which do not use their services. We use the information collected from these services to help make the website easier to use.
- Mobile Device Identifiers: Mobile device identifiers are data stored on your mobile device that may track mobile device and data and activities occurring on and through it, as well as the applications installed on it. Mobile device identifiers enable the collection of personal information (such as media access control, address, and location) and traffic data. Mobile device identifiers help Bridge the Gap – SYNGAP Education and Research Foundation (“SYNGAP1 Foundation”) learn more about our users’ demographics and internet behaviors.
Information from Third Parties
We may obtain additional information about you from third parties such as marketers, partners, researchers, and others. We may combine information that we collect from you with information about you that we obtain from such third parties and information derived from any other subscription, product, or service we provide.
Aggregate or De-identified Data
Use of Information
We use the information that we collect for the following purposes:
- For the purposes for which you provided the information (g., to send brochures to you, to process your transaction, to connect you with vendors when requested by you, who may provide you with information about products and services, and to respond to your inquiries;
- To personalize your experience with the website by informing you of products, programs, events, services, and promotions of Bridge the Gap – SYNGAP Education and Research Foundation (“SYNGAP1 Foundation”), our affiliates, our partners and/or third parties that we believe may be of interest to you (See the “Opt-In Policy” below);
- To provide, maintain, administer, improve, or expand the website, perform business analyses, or for other internal purposes to support, improve or enhance our business, the website, and other products and services we offer;
- To administer online surveys or online sweepstakes or contests in which you choose to participate, and to provide notifications or deliver requested materials related to the survey, sweepstakes or contest;
- To fulfill your purchase from us, including, to process your payments, communicate with you regarding your purchase or provide you with related customer service;
- To contact you when necessary or requested;
- To customize and tailor your experience of the website;
- To send emails and other communications that display content that we think will interest you and according to your preferences;
- To send you news and information about our website and services;
- To track and analyze trends and usage in connection with our website;
- To better understand who uses the website and how we can deliver a better user experience;
- To use statistical information that we collect in any way permitted by law, including from third parties in connection with their commercial and marketing efforts;
- To prevent, detect, and investigate security breaches, fraud, and other potentially illegal or prohibited activities;
- To enforce the legal terms that govern your use of the website;
- To protect our rights or property;
- To administer and troubleshoot the website; and
- For any other purpose disclosed to you in connection with our website or services.
We may use third-party service providers to process and store personal information in the United States and other countries.
Sharing of Information
We may share personal information about you as follows:
- With third parties to provide, maintain, and improve our services and website, including service providers who access information about you to perform services on our behalf;
- With our affiliates, partners or other third parties to allow them to contact you regarding products, programs, services, and promotions that we and/or they believe may be of interest to you (See the “Opt-In Policy” below);
- With third-party sponsors of sweepstakes, contests or similar promotions to administer those activities and provide notifications or deliver requested materials related to the survey, sweepstakes or contest;
- In connection with, or during the negotiation of, any merger, sale of company stock or assets, financing, acquisition, divestiture or dissolution of all or a portion of our business (but only under non-disclosure and confidentiality agreements and protections);
- If we believe that disclosure is reasonably necessary to comply with any applicable law, regulation, legal process or governmental request; to enforce applicable user agreements or policies; to protect the security or integrity of our website or services; and to protect us, our users or the public from harm or illegal activities; and
- With your consent.
We may also share aggregated, non-personally identifiable information with third parties.
When you supply us with personally identifiable information in connection with your use of the website, you may be asked to indicate whether you are interested in receiving information from us about our product and service offerings and if you would like us to share personally identifiable information about you with our affiliates, partners or other third parties for their marketing purposes. If you do choose to opt-in, you will receive such communications and/or we will share your information in accordance with your “opt-in” consent.
You may, of course, choose not to receive additional marketing information from us or choose not to allow our sharing of your personally identifiable information as follows: At any time, you can follow a link provided in our marketing-related email messages (but excluding e-commerce confirmations and other administrative emails) to opt out from receiving such communications; or at any time, you can contact us in accordance with the “Contact Us” section below to opt out from receiving such communications.
If you decide to contact us to change your contact preferences to opt out of receiving communications from us, please specify clearly which of the following choices you are opting out of: (a) Receiving marketing communications from us; (b) Allowing us to share personally identifiable information about you with our affiliates and partners for their marketing purposes; and/or (c) Allowing us to share personally identifiable information about you with other third parties for their marketing purposes.
We will endeavor to implement your requested change as soon as reasonably practicable after receiving your request. Please be aware that your requested change will not be effective until we implement such change. Please note that if you choose not to allow our sharing of your personally identifiable information, we are not responsible for removing your personally identifiable information from the databases of third parties with which we have already shared your personally identifiable information as of the date that we implement your request. If you wish to cease receiving marketing-related e-mails from these third parties, please contact them directly or utilize any opt-out mechanisms in their privacy policies or marketing-related e-mails.
Please note that if you do opt-out of receiving marketing-related messages from us, we may still send you important administrative messages. You cannot opt-out from receiving these administrative messages. We reserve the right, from time to time, to contact former customers or users of the website for administrative purposes or in order to comply with applicable laws, rules or regulations.
Social Media and Third Party Platforms
We take reasonable measures, including administrative, technical, and physical safeguards, to help protect personal information from loss, theft, misuse, unauthorized access, disclosure, alteration, and destruction. Unfortunately, no data transmission over the Internet can be guaranteed to be 100% secure. As a result, while we strive to protect your personal information, Bridge the Gap – SYNGAP Education and Research Foundation (“SYNGAP1 Foundation”) cannot ensure or warrant the security of any information you transmit to us or from our online products or services, and you do so at your own risk.
Your Privacy Choices
How You Can Access and Update Your Information
You may update or correct information about yourself at any time or by emailing us at firstname.lastname@example.org.
Most web browsers are set to accept cookies by default. If you prefer, you can usually choose to set your browser to remove or reject cookies; however, our website may not function properly if you do so.
Options for Opting out of Cookies and Mobile Device Identifiers
If you are interested in more information about interest-based advertising and how you can generally control cookies from being put on your computer to deliver tailored advertising, you may visit the Network Advertising Initiative’s Consumer Opt-Out link, the Digital Advertising Alliance’s Consumer Opt-Out link or TRUSTe’s Advertising Choices Page to opt-out of receiving tailored advertising from companies that participate in those programs.
Please note that even after opting out of interest-based advertising, you may still see Bridge the Gap – SYNGAP Education and Research Foundation’s (“SYNGAP1 Foundation”) advertisements that are not interest-based (i.e., not targeted toward you). Also, opting out does not mean that Bridge the Gap – SYNGAP Education and Research Foundation (“SYNGAP1 Foundation”) is no longer using its tracking tools—Bridge the Gap – SYNGAP Education and Research Foundation (“SYNGAP1 Foundation”) still may collect information about your use of the website even after you have opted out of interest-based advertisements and may still serve advertisements to you via the website based on information it collects via the website.
How Bridge the Gap – SYNGAP Education and Research Foundation Responds to Browser “Do Not Track” Signals
We are committed to providing you with meaningful choices about the information collected on our website for third-party purposes, and that is why we provide above the Network Advertising Initiative’s “Consumer Opt-out” link, Digital Advertising Alliance’s Consumer Opt-Out Link, and TRUSTe’s Advertising Choices page. However, we do not recognize or respond to browser-initiated Do Not Track signals, as the Internet industry is currently still working on Do Not Track standards, implementations and solutions. For more information about DNT signals, visit http://allaboutdnt.com.
Links to Other Websites
This website may contain links to other websites and those websites may not follow the same privacy practices as Bridge the Gap – SYNGAP Education and Research Foundation (“SYNGAP1 Foundation”). We are not responsible for the privacy practices of third party websites. We encourage you to read the privacy policies of such third parties to learn more about their privacy practices.
Bridge the Gap – SYNGAP Education and Research Foundation (“SYNGAP1 Foundation”) does not knowingly collect or maintain personally identifiable information from persons under 13 years of age without verifiable parental consent, and no part of the website or services are directed at persons under 13. If you are under 13 years of age, then please do not use the website or services. If Bridge the Gap – SYNGAP Education and Research Foundation (“SYNGAP1 Foundation”) learns that personally identifiable information of persons less than 13 years of age has been collected without verifiable parental consent, then Bridge the Gap – SYNGAP Education and Research Foundation (“SYNGAP1 Foundation”) will take the appropriate steps to delete this information. To make such a request, please contact us at email@example.com.
Your California Privacy Rights
California law permits users who are California residents to request and obtain from us once a year, free of charge, a list of the third parties to whom we have disclosed their personal information (if any) for their direct marketing purposes in the prior calendar year, as well as the type of personal information, disclosed to those parties. If you are a California resident and would like to request this information, please submit your request in an email to firstname.lastname@example.org.
No Rights of Third Parties
How to Contact Us
Bridge the Gap – SYNGAP Education and Research Foundation
15319 Redbud Berry Way
Cypress, Texas 77433
Phone: (240) 347-0302