Donor Privacy Policy

The Foundation for Angelman Syndrome Therapeutics (“FAST”) is committed to safeguarding your privacy and personal data. FAST will not sell, trade or share a donor’s personal information with anyone else, nor send donor mailings on behalf of other organizations. FAST will only share personal information once the donor has given specific permission to do so.

The Donor Bill of Rights was created by the Association of Fundraising Professionals (AFP), the Association for Healthcare Philanthropy (AHP), the Council for Advancement and Support of Education (CASE), and the Giving Institute: Leading Consultants to Non-Profits. It has been endorsed by numerous organizations.

The Donor Bill of Rights

Philanthropy is based on voluntary action for the common good. It is a tradition of giving and sharing that is primary to the quality of life. To assure that philanthropy merits the respect and trust of the general public, and that donors and prospective donors can have full confidence in the not-for-profit organizations and causes they are asked to support, we declare that all donors have these rights:

  1. To be informed of the organization’s mission, of the way the organization intends to use donated resources, and of its capacity to use donations effectively for their intended purposes.
  2. To be informed of the identity of those serving on the organization’s governing board, and to expect the board to exercise prudent judgment in its stewardship responsibilities.
  3. To have access to the organization’s most recent financial statements.
  4. To be assured their gifts will be used for the purposes for which they were given.
  5. To receive appropriate acknowledgement and recognition.
  6. To be assured that information about their donation is handled with respect and with confidentiality to the extent provided by law.
  7. To expect that all relationships with individuals representing organizations of interest to the donor will be professional in nature.
  8. To be informed whether those seeking donations are volunteers, employees of the organization or hired solicitors.
  9. To have the opportunity for their names to be deleted from mailing lists that an organization may intend to share.
  10. To feel free to ask questions when making a donation and to receive prompt, truthful and forthright answers.

Privacy Policy

Effective Date: August 11, 2021

Introduction and Scope

The Foundation for Angelman Syndrome Therapeutics (“FAST”, “we”, “us” or “our”) respects the privacy of our visitors, users, donors, and members (referred to as “you” or “your”). This privacy policy (and as amended from time to time as posted on our website here (at www.cureangelman.org/donate/privacy-policy)) (“Privacy Policy”) describes the types of information we may or do collect from you or that you may provide when you visit or use our cureangelman.org website (“Website”), purchase our products (“Products”), or use our services (“Services”), and our practices for collecting, using, maintaining, protecting, disclosing, retaining, and transferring that information. This Privacy Policy applies to the data collected by us, or those working on our behalf, through information you enter or from the data imported from authorized and approved sources. It does not apply to data collected through other websites, products, or services not approved by us.

Acknowledgement and Consent

By visiting our Website, purchasing our Products, or using our Services in any manner, you acknowledge that you accept the terms, practices and policies described in this Privacy Policy (and as updated from time to time), and you hereby consent that we may collect, use, and share your information as described herein. If you do not agree with our policies and practices, your choice is not to use our Website or our Services. Your use of the Website and our Services is at all times subject to our Terms of Use (available at www.cureangelman.org/terms) and as updated from time to time (the “Terms”)), which is incorporated by reference herein. Any capitalized terms we use in this Privacy Policy without defining them have the definitions given to them in the Terms.

What Information Does This Privacy Policy Cover?

This Privacy Policy covers our treatment of personally identifiable information. Such information may include name, mailing address, email address, telephone number, and other information which identifies you as a specific individual (“Personal Information”). Please see additional information below on the information we collect. For this Privacy Policy the definition of “Personal Information” is the definition under the state, country, or other law applicable to the person whose data is collected.

Personal Information does not include your Personal Information that has been deidentified, pseudonymized, anonymized, aggregated, and/or otherwise processed so as to be unidentifiable in such a way that the data can no longer be attributed to a specific individual (by reasonable means) without the use of additional information, and where such additional information is kept separate and under adequate security to prevent unauthorized re-identification of a specific individual such that one could not, using reasonable efforts, link such information back to a specific individual (collectively, all of the foregoing in this sentence being referred to as “De-Identified Personal Information”).

Other than as stated herein, this Privacy Policy does not apply to information collected by any third party (including our affiliates and subsidiaries), including through any application or content (including advertising) that may link to or be accessible from or on our Website. We are not responsible for the practices of sites linked to from the Services, and before interacting with any of these sites you are advised to review their rules and policies before providing them with any private information.

Individuals under the Age of 13

We do not knowingly collect, solicit or maintain Personal Information from anyone under the age of 13 or knowingly allow such persons to register for our Services. If you are under 13, please do not send any Personal Information about yourself (such as your name, address, telephone number, or email address) to us. In the event that we learn that we have collected Personal Information from a child under age 13 without verification of parental consent, we will use commercially reasonable efforts to delete that information from our database. Please contact us if you have any concerns.

Changes to Our Privacy Policy

We are constantly working to improve our Website and Services, and we may need to change this Privacy Policy from time to time as well. Our current Privacy Policy will always be on our Website at www.cureangelman.org/donate/privacy-policy and any updates will be effective upon posting. You are responsible for periodically checking our Website for updates.

Please note that if you have opted not to receive legal notice emails from us (or you haven’t provided us with your email address), those legal notices will still govern your use of the Services, and you are still responsible for reading and understanding them. If you use the Website, purchase products, or use our Services after any changes to the Privacy Policy have been posted, that means you agree to the new Privacy Policy, including all of the changes. Use of information we collect now is subject to the Privacy Policy in effect at the time such information is collected.

Personal Information We Collect

We may collect several categories of Personal Information from and about you as summarized in the following table:

Category

Specific Items of Personal Information

Identifiers

First and last name, user name (which may include first and last name), email address, postal address, unique personal identifier, account name or number, phone number,  cookies, beacons, pixel tags, mobile ad identifiers

Characteristics of protected classifications under other California or federal law

Race, color, sex, gender identity and expression, sexual orientation, age, religion, national origin, disability, citizenship status, and genetic information

Commercial Information

Products/services purchased, donation history

Internet or other electronic network activity

Browsing, session, interaction, and search history related to our Website

Professional or employment information

Email address that identifies you (e.g., jane.r.smith@website.com versus jrs@website.com)

How We Collect Personal Information and from What Sources

Information You Provide Us. The Personal Information we collect through our Website, or from our service providers may be obtained as part of the following:

  • Information that you provide by filling in webforms on our Website. This includes information provided when creating an online account through our fundraising platform, purchasing our Products, subscribing to our e-newsletters or other communications, requesting information from us, submitting or posting material (where permitted) on our forums, or interacting with customer support or service, report a problem with our Website, products, or Services, or otherwise communicating with us.
  • Records and copies of your correspondence (including email addresses), if you contact us
  • Registering for an event
  • Your responses to surveys that we or our service providers might ask you to complete for research purposes
  • Your search queries on the Website
  • When communicating with customer service/support
  • Third party websites and mobile applications (e.g., websites that share information with us regarding online activities)
  • Data suppliers (e.g., companies that provide demographics and other information regarding consumers, donors, or the like)
  • When making a donation via our Website
  • Fulfillment and delivery service providers
  • Social media companies
  • Other service providers

 

Information We Collect Through Automatic Data Collection Technologies. As you navigate through and interact with our Website, we may use automatic data collection technologies to collect certain information about your equipment, browsing actions and patterns, including:

  • Details of your visits to our Website, including, but not limited to, traffic data, geolocation data, logs, and other communication data and the resources that you access and use on the Website.
  • Information about your computer, mobile device, and internet connection, including your IP address, operating system, browser type, clickstream patterns, the URL of the most recent website you visited before coming to our Website, the amount of time you spent on our Website, and the pages you viewed while on our Website.
  • We also may use these technologies to collect information about your online activities over time and across third-party websites or other online services, or associate Personal Information with other information collected in this manner.

The information we collect automatically is statistical data and may include Personal Information, but we may maintain it or associate it with Personal Information we collect in other ways or receive from third parties. It helps us to improve our Website and to deliver better and more personalized Products and Services, including, but not limited to, by enabling us to: (a) estimate our audience/visitor size and usage patterns; (b) store information about your preferences, allowing us to customize and improve our Website; (c) speed up your searches; and/or, (d) recognize you when you return to our Website.

Cookie Notice/Policy

The technologies we use for this automatic data collection may include cookies, local storage cookies, web beacons, pixel tracking, GIF and/or IP address. Each of these is discussed below.

Cookies (or browser cookies)

A cookie is a small file placed on the hard drive of your computer or mobile device. It may contain certain data, including, but not limited to: the name of the server that has placed it there, an identifier in the form of a unique number, and, an expiration date (some cookies only). Cookies are managed by the web browser on your computer or mobile device (Internet Explorer, Firefox, Safari or Google Chrome).

Different types of cookies which have different purposes are used on our Website.

Essential Cookies

These cookies are essential to allow you to browse our Website and use its functions. Without them, services such as shopping baskets and electronic invoicing would not be able to work.

Performance Cookies

These cookies collect information on the use of our Website, such as which pages are consulted most often. This information enables us to optimize our Website and simplify browsing. These cookies do not collect any information which could be used to identify you. All the information collected is aggregated, and therefore anonymous.

Functionality Cookies

These cookies enable our Website to remember the choices you have made when browsing. For example, we can store your geographical location in a cookie so that the Website corresponding to your area is shown. We can also remember your preferences, such as the text size, font and other customizable aspects of the Website. Functionality cookies may also be able to keep track of the products or videos consulted to avoid repetition. The information collected by these cookies cannot be used to identify you and cannot monitor your browsing activity on sites which do not belong to us.

It is possible that you will come across third-party cookies on some pages of sites that are not under our control.

We also use cookies to implement tracking technology on our Website. This allows us to display advertising that is tailored to you on our Website which parts of our content interest you the most and which Service categories you request. This tracking uses De-Identified Personal Information data). We will not combine this data with your other Personal Information without your express permission. Some of our service providers are allowed to place cookies on our Website. Those companies may also provide you with the option of preventing the use of cookies in the future. For more information, contact the relevant third-party provider.

At any time, you can prevent the use of cookies in the future. You may activate the appropriate setting in your browser to refuse to accept browser cookies. However, if you do, your experience on our Website may be affected; e.g., you may be unable to access certain parts of our Website. Unless you have adjusted your browser setting so that it will refuse cookies, our system will issue cookies when you direct your browser to our Website.

Local Storage Cookies. Certain features of our Website may use local stored objects (or Adobe Flash cookies) to collect and store information about your preferences and navigation to, from and on our Website. Local storage cookies are not managed by the same browser settings as are used for browser cookies.

Web Beacons. Pages of our Website and our emails may contain small electronic files known as web beacons (also referred to as clear gifs, pixel tags and single-pixel gifs) that permit us, for example, to count users who have visited those pages or opened an email and for other related website statistics (for example, recording the popularity of certain website content and verifying system and server integrity).

Pixel Tracking. In addition to using Cookies, the Website may employ “pixel tracking”, a common process which may be used in connection with advertisements on other sites. Pixel tracking involves the use of pixel tags that are not visible to the user and consist of a few lines of computer code. Pixel tracking measures the effectiveness of advertisements and compiles aggregate and specific usage statistics. A “pixel tag” is an invisible tag placed on certain pages of websites that is used to track an individual user’s activity. We may access these pixel tags to identify activity and interests that may allow us to better match our products, services, and offers with your interests and needs. For example, if you visit our Website from an advertisement on another website, the pixel tag will allow the advertiser to track that its advertisement brought you to the Website. If you visit our Website, and we link you to another website, we may also be able to determine that you were sent to and/or transacted with a third-party website. This data is collected for use in our marketing, research, and other activities.

GIF. We may use tiny images known as clear GIFs to track behavior of users, including statistics on who opens our emails.

IP Address. Our servers (or those of our service providers) automatically record certain log file information reported from your browser when you access the Website. These server logs may include information such as which pages of the Website you visited, your internet protocol (“IP”) address, browser type, and other information on how you interact with the Website. These log files are generally deleted periodically.

Information We Collect from Third Parties

We may collect information that others provide about you when you use the Website, or obtain information from other sources and combine that with information we collect through the Website.

  • Third Party Services. If you link, connect, or login to your account with a third party social media service (e.g., Facebook, Google, Instagram, Yelp, etc.), the third party service may send us information such as your registration and profile information from that service. This information varies and is controlled by that service or as authorized by you via your privacy settings at that service.
  • Other Sources. To the extent permitted by applicable law, we may receive additional information about you, such as demographic data or fraud detection information, from third party service providers and/or partners, and combine it with information we have about you. For example, we may receive background check results or fraud warnings from service providers like identity verification services for our fraud prevention and risk assessment efforts. We may receive information about you and your activities on and off the Website through partnerships, or about your experiences and interactions from our partner ad networks.

 

Third-Party Use of Cookies and Other Tracking Technologies

Some content or applications, including advertisements, on the Website are served by third parties, including advertisers, ad networks and servers, content providers and application providers. First-party or third-party cookies may be used alone or in conjunction with web beacons or other tracking technologies to collect information about you when you use our Website. A first-party cookie is a cookie set by the domain name that appears in the browser address bar. A third-party cookie is a cookie set by (and on) a domain name that is not the domain name that appears in the browser address bar. It might be set as part of a side resource load (image, JS, iframe, etc., from a different hostname) or an AJAX HTTP request to a third-party server. The information that first-party and third-party cookies collect may be associated with your Personal Information or they may collect information, including Personal Information, about your online activities over time and across different websites and other online services (i.e., tracking such activities). They may use this information to provide you with interest-based (behavioral) advertising or other targeted content.

We do not control these third parties’ tracking technologies or how they may be used. If you have any questions about an advertisement or other targeted content, you should contact the responsible provider directly. For more information on how to opt-out of third-party advertiser tracking mechanisms, please click here.

Third-Party Use of Cookies and Other Tracking Technologies

Some content or applications, including advertisements, on the Website are served by third parties, including advertisers, ad networks and servers, content providers and application providers. First-party or third-party cookies may be used alone or in conjunction with web beacons or other tracking technologies to collect information about you when you use our Website. A first-party cookie is a cookie set by the domain name that appears in the browser address bar. A third-party cookie is a cookie set by (and on) a domain name that is not the domain name that appears in the browser address bar. It might be set as part of a side resource load (image, JS, iframe, etc., from a different hostname) or an AJAX HTTP request to a third-party server. The information that first-party and third-party cookies collect may be associated with your Personal Information or they may collect information, including Personal Information, about your online activities over time and across different websites and other online services (i.e., tracking such activities). They may use this information to provide you with interest-based (behavioral) advertising or other targeted content.

We do not control these third parties’ tracking technologies or how they may be used. If you have any questions about an advertisement or other targeted content, you should contact the responsible provider directly. For more information on how to opt-out of third-party advertiser tracking mechanisms, please click here.

Google

Google Analytics. We use, and some of our third-party service providers may use, Google Analytics (click for link to Google’s website) or other analytics service to help us understand use of our Website and Services. Such service providers may place their own cookies in your browser. This Privacy Policy covers use of cookies by us only and not the use of cookies by third parties.

Google reCAPTCHA. We may use Google reCAPTCHA, which identifies bots by collecting hardware and software information and sending that data to Google for analysis. To learn more about Google reCAPTCHA, please visit https://www.google.com/recaptcha/intro/invisible.html and https://www.google.com/policies/privacy/.

Users can set preferences for how Google advertises to you using the Google Ad Settings page. Alternatively, you can opt out by visiting the Network Advertising Initiative Opt Out page or by using the Google Analytics Opt Out Browser add-on.

Posting Content

You also may submit information, such as comments, reviews, testimonials, etc., to be published or displayed (“posted”) on public areas of the Website, or transmitted to other users of the Website or third parties (collectively, “Content”). Your Content is posted and transmitted to others at your own risk. We cannot control the actions of other users of the Website with whom you may choose to share your Content. Therefore, we cannot and do not guarantee that your Content will not be viewed by unauthorized persons. By posting any Content or submitting Content for posting you agree to and do hereby grant us and our licensors, affiliates, partners, successors and assigns, a nonexclusive, perpetual, irrevocable, worldwide, sublicensable, transferrable, royalty-free right and license to use, store, display, publish, transmit, transfer, distribute, reproduce, rearrange, edit, redact, modify, aggregate, summarize, adapt, create derivative works of and publicly perform the Content that you post or otherwise submit to us for any purpose, in any form, medium, or technology now known or later developed (“Right to Use”).

The Right to Use you grant us above also extends to any Content that you have posted to our Facebook or other social media account pages, or on other websites, e.g., Google, Yelp, Trip Advisor, Instagram, etc. The term “Use” includes, but is not limited to, use, reproduce, modify, publish, list information regarding, edit, delete, translate, distribute, publicly display, publicly perform, and make derivative works of the content.

If we permit you to post Content, by posting any Content, or submitting Content for posting, you agree to with the following “User Content Posting Guidelines”:

To the extent our Website contains areas where you can post or submit to be posted such as comments, product reviews, testimonials, etc., you agree to post Content that is proper and related to the general theme of the Website. Content also includes that which you send to us by email, text, mail, or other means. You agree not to post or submit any Content that:

  • Is off-topic, false, inaccurate, misleading, defamatory, libelous, stalking, threatening, obscene, pornographic, indecent, vulgar, offensive, which contains unlawful material or information, or which otherwise violate the legal rights (such as rights of privacy and publicity) of others;
  • Harasses, degrades, intimidates, or is hateful toward an individual or group of individuals on the basis of religion, gender, sexual orientation or identity, race, ethnicity, age, or disability;
  • Is not your own original creation or that you do not have permission to use or that infringes the copyright, trademark, patent, or other proprietary right of any person or that is used without the permission of the owner;
  • Is intended to provide professional advice, including but not limited to, the provision of medical treatment, or legal, financial or investment advice;
  • Promotes or provides instructional information about illegal or illicit activities;
  • Purports to be from any person or entity, including but not limited to one of our employees, or falsely states or otherwise misrepresents your affiliation with a person or entity;
  • Includes personal or identifying information about another person without that person’s explicit consent, or is doxxing;
  • Contains software code of any kind, including, but not limited to, code that contain viruses, corrupted files, or any other similar software or programs designed to or that may interrupt, lock up, destroy, damage or limit the operation of another person’s computer or network or telecommunications equipment;
  • Disrupts the normal flow of dialogue with an excessive number of messages (flooding attack) to the Website, or that otherwise negatively affects the ability of others to use the Website; or,
  • Advertises or offers to sell any goods or services, or engage in surveys, contests, chain letters, or for any commercial purpose.

You may not attempt to gain unauthorized access to our computer systems or those of any our service providers or third parties, or engage in any activity that disrupts, diminishes the quality of, interferes with the performance of, or impairs the functionality of, the Website or our services. We reserve the right, but do not undertake the obligation, to refuse to post or remove any posted Content from our Website for violation of these rules or for any other reason, and to refuse to accept any future postings by you.

How We Use Your Information

We use information that we collect about you or that you provide to us, including any Personal Information, for one or more of the following purposes:

  • To present our Website and its contents to you.
  • To provide you with information and respond to your questions on products or Services that you request from us and information on new products and services, discounts, special promotions or upcoming events, and features or offers that we believe will be of interest to you.
  • To provide you with the products, services, or information that you have requested.
  • To process transaction payments, including, but not limited to, product and/or service fees, donations, subscription fees, professional fees, membership dues, registration fees, voluntary contributions, examination fees, credential and designation fees, and payments, refunds and reimbursements for any products or services that you choose to purchase from us (though we do not receive your credit or debit card number).
  • To provide you with notices about your fundraising account, including expiration and renewal notices.
  • To notify you about information regarding or changes to our Website, our policies, terms, or any products or Services we offer or provide, or regarding your account
  • To allow you to participate in interactive features on our Website.
  • To contact you about our own and third-parties’ products and services that may be of interest to you.
  • To enhance and improve our products and Services, for example, by performing internal research, analyzing user trends, or measuring demographics and interests.
  • For internal purposes, such as Website and system administration or internal audits and reviews.
  • For analyzing how the Services are used, diagnosing Service or technical problems, maintaining security, and personalizing content.
  • To operate, maintain, and provide to you the features and functionality of the Services.
  • To provide statistics about the usage levels of the Website and other related information to our service providers.
  • To notify you of data privacy incidents or provide you with legally required information.
  • To contact you regarding a sweepstakes, contest or promotion in which you have participated.
  • To request your participation in ratings, reviews, surveys, focus groups, or other initiatives which help us to gather information used to develop and enhance our Products and Services.
  • To determine eligibility for membership, credentials, designations, or volunteer opportunities.
  • For examination or event registration, scheduling, event attendance, administration and related purposes.
  • To fulfill any other purpose for which you provide Personal Information.
  • In any other way we may describe and for which we obtain your consent when you provide the information and you give your consent.

We use cookies, clear gifs, and log file information to: (a) remember information so that you will not have to re-enter it during your visit or the next time you visit the Website; (b) provide custom, personalized content and information; (c) monitor the effectiveness of our Service; (d) monitor aggregate metrics such as total number of visitors, traffic, and demographic patterns; (e) diagnose or fix technology problems reported by our users or engineers that are associated with certain IP addresses; and, (f) help you efficiently access your information after you sign in.

Text Messages

We use the information we collect about you to deliver the Services we offer, and to operate and improve our Website. Our services may include a Short Message Service (“SMS”) which may deliver up to two messages per day to your wireless device. We may use your information to contact you about your reservation, purchases, Website updates, conduct surveys, or informational and service-related communications, including important security updates. You may remove your information by replying “STOP” to the SMS text message you received. Alternatively, you may submit your request by email to us, including the email address and phone number you registered with us.

How We Share Your Personal Information

We may or do disclose your Personal Information, in whole or in part, to the following types of third parties, and for one or more the following purposes:

  • Data storage or hosting providers for the secure storage and transmission of your data
  • Database and software service providers for the management and tracking of your data
  • Technology providers who assist in the development and management of our Website
  • Identity management providers for authentication purposes
  • Legal and compliance consultants, such as external counsel, external auditors, or tax consultants
  • Payment solution providers for the secure processing of payments you provide to us
  • Fulfillment and shipping vendors for the fulfillment of our Products and Services
  • Survey and research providers who perform studies on our behalf
  • Learning technology and online event providers for the delivery and improvement of web events and learning programs and the tracking of your progress
  • Advertising partners, including social media providers, for the delivery of targeted advertisements
  • Our volunteers or committee members who perform various functions on our behalf

 

Disclosures to Service Providers: We may share your Personal Information with third parties for the purpose of providing or improving the Services to you. We may share your Personal Information with third party service providers which perform services on our behalf (“Service Providers”). This includes, without limitation, Service Providers which provide services relating to: outbound and/or inbound communications, data analysis, credit checks, screening checks, collection services, marketing assistance, managing customer information, creating, hosting, and/or providing customer or support services on our behalf, fulfilling orders, delivering packages, sending postal mail and email, removing repetitive information from customer lists, providing search results and links (including paid listings and links), and processing credit card payments. These Service Providers may have access to your Personal Information in order to provide these services to us or on our behalf. If we engage Service Providers for any of the foregoing, use of your Personal Information will be bound by obligations of confidentiality and their use of Personal Information will be restricted to providing their services to us. We may store Personal Information in locations outside our direct control (for instance, on servers or databases located or co-located with hosting Service Providers).

Event-Related Disclosures: From time to time, we may run contests, special offers, or other events or activities (“Events”), possibly together with a third party Service Provider. If you provide information to such Service Providers, you give them permission to use it for the purpose of that Event and any other use to which you consent. We cannot control such third parties’ use of your information. If you do not want your information to be collected by or shared with such third parties, you can choose not to participate in these Events.

Required Disclosures: Except as otherwise described in this Privacy Policy, we will not disclose your Personal Information to any third party unless required to do so by law, court order, legal process, or subpoena, including to respond to any government or regulatory request, or if we believe that such action is necessary to: (a) comply with the law, comply with legal process served on us or our affiliates, subsidiaries, contracted vendors, or affinity partners, or investigate, prevent, or take action regarding suspected or actual illegal activities; (b) enforce our Terms or customer agreement (including for billing and collection purposes); (c) take precautions against liability; (d) investigate and defend ourselves against any third-party claims or allegations; (e) assist government enforcement agencies or to meet national security requirements; (f) to protect the security or integrity of our Website, our Services, or any software we provide related thereto; or, (g) exercise or protect the rights, property, or personal safety of us, our users or others. For example, we may be required by law (e.g., New York law) to disclose limited information about you for COVID-19 contact tracing.

We will attempt to notify you about these requests unless: (i) providing notice is prohibited by the legal process itself, by court order we receive, or by applicable law, or (ii) we believe that providing notice would be futile, ineffective, create a risk of injury or bodily harm to an individual or group, or create or increase a risk of fraud upon us, our users, our Website, or our Services. In instances where we comply with legal requests without notice for these reasons, we will attempt to notify that user about the request after the fact if we determine in good faith that we are no longer legally prohibited from doing so and that no risk scenarios described in this paragraph apply.

It is likely that the identity and categories of such third parties will change during the life of your account. We require that our third-party service providers only use your Personal Information as necessary to provide the requested services to us and each service provider is subject to a set of terms consistent with the applicable portions of this Privacy Policy.

We do not disclose or share your Personal Information with any third parties for which we receive any monetary or other valuable consideration. In other words, we do not sell your Personal Information, period.

Disclosure of De-Identified Personal Information: We may share De-Identified Personal Information with third parties for any purpose. De-Identified Personal Information or non-Personal Information may be aggregated for system administration and to monitor usage of the Website. It may be utilized to measure the number of visits to our Website, average time spent, number of pages viewed and to monitor various other Website statistics. This monitoring helps us evaluate how visitors use and navigate our Website so we can improve the content. We may share De-Identified Personal Information or anonymous information (including, but not limited to, anonymous usage data, referring/exit pages and URLs, IP address, platform types, number of clicks, etc.) with interested third parties in any way we choose and for any purpose.

Your Consent to Disclosure/Transfer/Sale of Your Personal Information: You consent to our disclosure of your Personal Information and other information to a potential or actual buyer of our company or other successor for the purpose of considering a merger, divestiture, restructuring, reorganization, dissolution, change in control, or sale or transfer of some or all of our assets (each of the foregoing referred to as a “Transfer”),, whether as a going concern or as part of bankruptcy, liquidation or other court proceeding, in which Personal Information held by us is among the assets transferred. You agree to and do hereby consent to (and shall not object to) our assignment, conveyance, transfer, and/or license (whether by contract, merger or operation of law) as part of a Transfer, of any or all of our rights, in whole or in part, in or to your Personal Information and other information and your consents, with or without notice to you and without your further consent.

Data Transfer/Access Outside of the United States

We have our headquarters in the United States. The Personal Information we or our service providers collect may be stored and processed in servers within or outside of the United States and wherever we and our service providers have facilities around the globe, and certain information may be accessible by persons or companies outside of the United States who provide services for us. As such, we and our service providers may transfer your Personal Information to, or access it in, jurisdictions that may not provide equivalent levels of data protection as your home jurisdiction. We will take reasonable steps to ensure that your Personal Information receives an adequate level of protection in the jurisdictions in which we process it. If you are located in the UK, European Economic Area (“EEA”), or Switzerland, we provide adequate protection for the transfer of Personal Information to countries outside of the UK, EEA, or Switzerland through appropriate agreements. We may also need to transfer your information to other group companies or service providers in countries outside the EEA. This may happen if our servers or suppliers and service providers are based outside the UK, EEA, or Switzerland, or if you use our services and products while visiting countries outside this area.

If you are a resident of a country other than the United States, you acknowledge and consent to our collecting, transmitting, processing, transferring, and storing your Personal Information out of the country in which you reside.

Security

We have implemented measures designed to secure your Personal Information from accidental loss and from unauthorized access, use, alteration and disclosure. Your Personal Information is contained behind secured networks and a firewall and is only accessible by our personnel and by a limited number of Service Providers who have special access rights to our systems, and who are required to keep the information confidential. Our Website are scanned on a regular basis for security holes and known vulnerabilities in order to make your visit to our Website safe.

Any payment transactions will be performed using our third-party payment processors or gateways, who will use appropriate security procedures designed to protect your information. We do not collect or store full credit card numbers.

The safety and security of your information also depends on you. You should maintain good internet security practices. Where you have password-protected access to an account or certain parts of the Website or Services, you are responsible for keeping this password confidential. You should not share your password with anyone. You must prevent unauthorized access to your account and Personal Information by selecting and protecting your password appropriately and limiting access to your computer or mobile device and browser by signing off after you have finished accessing your account. If your email account or Facebook account is compromised this could allow access to your account with us if you have given up those details and/or permitted access through those accounts. If your email account is compromised it could be used to ask us to reset a password and gain access to your account with us. If you think that any of your accounts have been compromised you should change your account credentials with us, and in particular make sure any compromised account does not allow access to your account with us. The information you share in public areas may be viewed by other users. We will never email you to ask for your password or other account login information. If you receive such an email, please send it to us so we can investigate.

You agree to and do hereby release and forever discharge us and our affiliates, subsidiaries, officers, directors, employees, and agents, and their respective successors and assigns, and you will indemnify, defend and hold us harmless, from and against any liability, claim, or cost (including attorneys’ fees), arising directly or indirectly from any failure by you to maintain the security of your email or other accounts that directly or indirectly results in an unauthorized third party having access to such email or accounts or causes us to transfer funds based on instructions purporting to have originated from you (i.e., “wire transfer fraud” or “business email compromise” events).

Unfortunately, the transmission of information via the internet is not completely secure. Although we do use security measures designed to protect your Personal Information, we cannot guarantee the security of your Personal Information transmitted to us or which we obtain. Any transmission of Personal Information is at your own risk. Unauthorized entry or use, or hardware or software failure, and other factors, may compromise the security of user information at any time. We are not responsible for circumvention of any privacy settings or security measures contained on the Website or used with our Services.

Data Retention

The time periods for which we retain your Personal Information depend on the purposes for which we use it. We will retain your Personal Information for as long as your account is active, or as long as you are a member or account holder or user of our Services or for as long as we have another business purpose to do so (such as, but not limited to, for business, tax, or legal purposes) and, thereafter, for no longer than is required or permitted by law, or our records retention policy, reasonably necessary for internal reporting and reconciliation purposes, or to provide you with feedback or information you might request. This period of retention is subject to our review and alteration.

Following termination or deactivation of your user account, we may retain your profile information and all information posted to public areas of the Website. Following termination or deactivation of your user account, we may retain your Personal Information and other data, but will maintain it as confidential according to the Terms, this Privacy Policy, and as required by applicable law. We have the right to delete all of your Personal Information and other data after termination of your user account without notice to you.

We may retain De-Identified Personal Information for as long as we deem appropriate.

You can delete your account or request that we delete your account by contacting us.

We retain your information after you request such deletion for longer periods for specific purposes to the extent that we are obliged to do so in accordance with applicable laws and regulations and/or as necessary to protect our legal rights or for certain business requirements. We may retain De-Identified Personal Information for as long as we deem appropriate. For example, if we process your payments, we will retain this data for longer periods of time as required for legal, regulatory, tax, or accounting purposes. Additional examples of specific reasons we would retain some data for longer periods of time include:

  • Our contractual and business relationships with you.
  • Security, fraud and abuse prevention – i.e., to protect you, other people, and us from fraud, abuse, and unauthorized access.
  • Financial recordkeeping – when you make a payment to us we are often required to retain this information for long period of time for purposes of accounting, dispute investigation and resolution, and compliance with tax, anti-money laundering, and other financial regulations.
  • Complying with legal or regulatory requirements – to meet any applicable law, regulation, legal process, or enforceable governmental request, as required to enforce our terms of service, including investigation of potential violations.
  • Direct communications with us – if you have directly communicated with us, through a customer support channel, feedback form, or a bug report, we may retain reasonable records of those communications.

Even if you delete your account, keep in mind that the deletion by our Service Providers may not be immediate and that the deleted information may persist in backup copies for a reasonable period of time. We may retain De-Identified Personal Information for as long as we deem appropriate.

What Information You Can Access, Change, or Delete

Through your user account settings page, you may access and, in some cases, edit, or delete certain information you have provided to us, such as name and password, email address, address, user profile information, etc. The information that you can view, update, and delete may change as the Products, Website, Services or our practices change. If you have any questions about viewing or updating information we have on file about you, please contact us.

Notices; Opting Out

By providing us with your email address (including by “following,” “liking,” linking your account to our Website or Service or other services, etc., on a third party website or network), you consent to our using the email address to send you Service-related notices by email, including any notices required by law (e.g., notice of data privacy or security incidents), in lieu of communication by postal mail. You also agree that we may send you notifications of activity regarding the Service or the Website to the email address you give us, in accordance with any applicable privacy settings. We may use your email address to send you other messages or content, such as, but not limited to, newsletters, additions or changes to features of the Service, or special offers. If you do not want to receive such email messages, you may opt out by emailing us your opt-out request or, where available, by clicking “unsubscribe” at the bottom of our e-newsletter. Opting out may prevent you from receiving email messages regarding updates, improvements, special features, announcements, or offers. You may not opt out of Service-related emails.

You can add, update, or delete information as explained above. When you update information, however, we may maintain a copy of the unrevised information in our records. You may request deletion of your account by emailing us. It is your responsibility to maintain your current email address with us.

Contact Information

If you have any questions about this Privacy Policy or our privacy practices, please contact us: by email at privacy@cureangelman.org.

Privacy Outside of the United States

If you are a citizen or resident of the UK, European Economic Area (“EEA”), Switzerland, or other regions with laws governing data collection and use that may differ from the laws in the United States, please note that we may transfer your information to a country or jurisdiction that does not have the same data protection laws as your jurisdiction. We may do so to process your information by staff operating outside these countries who works for us or for one of our service providers.

GDPR: The Follow Provisions Apply Only to Citizens and Residents of the United Kingdom, EEA, or Switzerland

The following provisions apply only if you are a citizen or resident of the UK, EEA or Switzerland. For such citizens or residents, all processing of your Personal Information is performed in accordance with privacy rights and regulations, in particular, (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, known as the General Data Protection Regulation (“GDPR”), and our processing will take place in accordance with the GDPR. For purposes of the GDPR, we will be the “data controller” of Personal Information (referred to and defined in the GDPR (available here) as “Personal Data”) we collect through the Website, unless we collect such information on behalf of a “data controller” in which case we will be a “data processor.” This Privacy Policy does not apply to websites, applications or services that do not display or link to this Privacy Policy or that display or link to a different privacy policy. For UK, EEA, and Switzerland residents and citizens only, to the extent any definition in this Privacy Policy conflicts with a definition under the GDPR, the GDPR definition shall control.

Our Legal Basis for Processing Personal Data (UK, EEA and Swiss Visitors Only)

The collection and processing of your personal information may be necessary for the purposes of our legitimate interests. Such legitimate interest purposes may include:

  • fraud prevention
  • ensuring network and information security
  • indicating possible criminal acts or threats to public security, including enhancing protection of our community against spam, harassment, intellectual property infringement, crime, and security risks of all kind, and enforcing legal claims, including investigation of potential violations of our Terms of Use
  • when we are complying with legal obligations
  • processing employee or visitor, member, attendee, or registrant data
  • performing the function or service you requested of us
  • providing our services and their functionality to you where such processing is necessary for the purposes of the legitimate interests pursued by us or by our service providers related to the services
  • direct marketing
  • the relevant and appropriate relationship we have with you
  • analytics, e.g., assess the number of visitors, page views, use of the Site, etc., in order to understand how our Site and services are being used, to optimize the Site and/or future communications, and to develop new services and Site features
  • updating your information and preferences
  • offering and improving our services
  • enforcing legal claims, including investigation of potential violations of applicable Terms of Use

 

Your Data Rights Under GDPR

If you are subject to GDPR, your rights include the following:

  • The right to access – Upon request, we will confirm any processing of your Personal Information and, and provide you with a copy of that Personal Information in an acceptable machine-readable format.
  • The right to rectification – You have the right to have us correct any inaccurate Personal Information or to have us complete any incomplete Personal Information.
  • The right to erasure – You may ask us to delete or remove your Personal Information and we will do so in some circumstances, such as where we no longer need it (we may not delete your data when other interests outweigh your right to deletion).
  • The right to restrict processing – You have the right to ask us to suppress the processing of your Personal Information but we may still store your Personal Information. See below for more information.
  • The right to object to processing – You have the right to object to your Personal Information used in the following manners: (a) processing based on legitimate interests or the performance of a task in the public interest/exercise of official authority (including profiling); (b) direct marketing (including profiling); and, (c) processing for purposes of scientific/historical research and statistics. See below for more information.
  • The right to data portability – You have the right to obtain your Personal Information from us that you consented to give us or that is necessary to perform fulfillment of member benefits with you. We will give you your Personal Information in a structured, commonly used and machine-readable format.
  • The right to complain to a supervisory authority – You have the right to file a complaint with a supervisory authority, in particular in the European member state of your habitual residence, place of work or place of the alleged infringement if you consider that the processing of Personal Information relating to you infringes upon your rights.
  • The right to withdraw consent – If we are processing your Personal Information based on your consent to do so, you may withdraw that consent at any time.

If you have specific questions or concerns about this Privacy Policy, or if you would like access to the personal information you have provided to FAST please contact us at info@cureangelman.org at the following address.

Foundation for Angelman Syndrome Therapeutics
P.O. Box 608
Downers Grove, IL 60515
866.783.0078
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