Home » Privacy Policy

PRIVACY POLICY

This is the privacy policy for GRIN2B Foundation.

This website is the property of GRIN2B Foundation. We take the privacy of all visitors to this website very seriously and therefore set out in this privacy policy our position regarding certain privacy matters and the use of cookies for these websites.

This policy covers all data that is shared by a visitor with us whether directly via www.grin2b.com, our social media pages or via email. This policy provides an explanation as to what happens to any personal data that you share with us, or that we collect from you either directly via these websites, our social media pages or via email.

Information we collect

While using our site or related social media pages, we may ask you to provide us with certain personal data that can be used to contact or identify you (“Personal Data”). Personal Data may include, but is not limited to:

  • Email address
  • First name and last name
  • Pictures or videos you submit
  • Geographical information about where you live
  • Name of individual diagnosed with a GRIN2B variation
  • Specific genetic diagnoses of individuals

We also collect data through Google Forms or Survey Monkey. Many* of our surveys are designed to be anonymous. However, respondents should be aware that in responding to surveys, they could be disclosing information that could make them personally identifiable to GRIN2B Foundation. Respondents to surveys should be aware that they alone are responsible for the content of their responses.

*Please note – our Family registry form is not anonymous. We are specifically collecting information about our patient families so that we can better serve each of you and the community as a whole. This information is for our internal purposes only and will not be shared with outside parties without your consent.

Google Forms:

https://policies.google.com/privacy

https://www.hipaajournal.com/google-forms-hipaa-compliant/

https://www.quora.com/Is-Google-Forms-GDPR-compliant

https://cloud.google.com/security/gdpr/

Survey Monkey – https://www.surveymonkey.com/mp/legal/security/

We direct you to our partner organization, Simons Searchlight, so that they may collect data for their GRIN2B patient registry database. Should you choose to participate in that registry, you will be directed to an outside link. Please note that we do not have any control over the data collected on this website. Please visit their privacy policy to learn more.

Information Collected Automatically

Like many websites, we and our third-party service providers, such as advertising and analytics providers, use cookies, web beacons and other data technologies to receive and store certain types of information when you interact with us through your computer or mobile device. Using these technologies helps us recognize you, customize your experience and make relevant marketing messages. Here are some of the types of information we collect:

  • Log & Device data. When you visit our site, we may automatically record information (“log data”), including information that your browser sends whenever you visit our site. This log data may include your web address you came from or are going to, your device model, operating system, browser type, unique device identifier, IP address, mobile network carrier, and time zone or location.
  • Our third party service providers may provide us information that tells us how our marketing ads, often placed on third party sites, performed and who clicked on them. This information does not identify any specific individual and is generally non-identifying. If we were to associate it with you we would treat it as personal data.

Use of cookies

Cookie data. We may use “cookies” (a small text file sent by your computer each time you visit our site) or similar technologies to record log data. Many browsers default to accepting cookies. You may be able to change this setting in your browser and you can also clear your cookies. If you do, you may lose some functionality of our site. Check your browser’s help function to learn more about your cookie setting options.

We may use the following types of cookies:

  • Advertising and analytics:  These cookies collect information about who is visiting our site and how users engage with our site.  This information does not identify any individual user. It is aggregated and anonymous. Information included in this analysis is number of visitors to our site, referring websites, pages visited while on this site, time of day visited our site, if this is a new or repeat visitor, and other comparable information.  This information is used to help us understand the usage of our site, improve and operate our services more efficiently and to monitor the activity on our site. Please see below for a listing of our analytics providers.
    • Essential cookies: These cookies help run our site and make your experience better. These include cookies that all you access to a members only part of the site or help the content of our site load quickly.  These cookies are only used to provide you with these services.
    • Functionality cookies: These cookies allow the site to remember preferences you have selected such as login details or other selections you may have made.  These are designed to make it easier to use our site and not have to set the same preferences every time.
    • Social Media cookies: We use social media tools on our site and these cookies allow the social media network to record when you have liked or engaged with a social media tool on our site. In some situations, the social network may send us data that you have set to share.  f you do not want the social media network to share information with us, please check your privacy settings with the social media network.
    • Advertising cookies: These cookies allow you to track browsing habits as you visit the site.  Based on your browsing history and with our permission, we use third party advertising partners who can then display to you a relevant ad when you are on a third-party site such as a social media platform.  Within these cookies, we may also know your precise location such as latitude, longitude, GeoIP, and other location specific information. Please see below for your choices on cookies in the use of advertising.
  • If you have any questions about cookies you can go to www.youronlinechoices.com/uk or http://www.allaboutcookies.org/.

Use of your information – Grounds for Using Your Personal Data

The information that we collect and store relating to you is primarily used to enable us to provide our services to you.

Sharing and Disclosure

We do not share your personal information with others except as indicated within this policy or when we inform you and give you an opportunity to opt out of having your personal information shared.

We will share your information in the following ways.

  • With third party service providers, agents, or contractors.  We use other companies, agents or contractors (“Service Providers”) to perform services on our behalf or to assist us with providing services to you. For example, we may engage Service Providers to process credit card transactions or other payment methods. Or, we may engage Service Providers to provide services such as marketing, advertising, communications, infrastructure and IT services, to provide customer service, to collect debts, and to analyze and enhance data (including data about users’ interactions with our service). These Service Providers may have access to your personal or other information in order to provide these functions. In addition, some of the information we request may be collected by third party providers on our behalf. We do not authorize them to use or disclose your personal information except in connection with providing their services.
  • Analytics. Specifically for analytics providers, we use Google Analytics, which is a web analytics service offered by Google that tracks and reports website traffic. Google uses the data collected to track and monitor the use of our Service. This data is shared with other Google services. Google may use the collected data to contextualize and personalize the ads of its own advertising network.

You can opt-out of having made your activity on the Service available to Google Analytics by installing the Google Analytics opt-out browser add-on. The add-on prevents the Google Analytics JavaScript (ga.js, analytics.js, and dc.js) from sharing information with Google Analytics about visits activity. For more information on the privacy practices of Google, please visit the Google Privacy & Terms web page: http://www.google.com/intl/en/policies/privacy/  Google also recommends installing the Google Analytics Opt-out Browser Add-on – https://tools.google.com/dlpage/gaoptout – for your web browser. Google Analytics Opt-out Browser Add-on provides visitors with the ability to prevent their data from being collected and used by Google Analytics.

  • Advertising.  We may use third-party Service Providers to show advertisements, which may include targeted advertisements on a third party site after you have visited our website.  We and the third party service providers use cookies to inform, optimize, measure performance serve ads based on your previous visits to our site. Any tracking that a third party performs is subject to their own privacy notice.

Please note at this time, we do not recognize automated browser signals regarding tracking mechanisms, which may include “do not track” instructions.

We work with Google AdSense & DoubleClick Cookie Google, as a third party vendor, uses cookies to serve ads on our site. Google’s use of the DoubleClick cookie enables it and its partners to serve ads to our users based on their visit to our Service or other websites on the Internet. You may opt out of the use of the DoubleClick Cookie for interest-based advertising by visiting the Google Ads Settings web page: http://www.google.com/ads/preferences/

Google AdWords/Analytics:

Google AdWords remarketing service is provided by Google Inc.

You can opt-out of Google Analytics for Display Advertising and customize the Google Display Network ads by visiting the Google Ads Settings page: http://www.google.com/settings/ads

For more information on the privacy practices of Google, please

visit the Google Privacy & Terms web page at http://www.google.com/intl/en/policies/privacy/

Twitter: You can opt-out from Twitter’s interest-based ads by following their instructions: https://support.twitter.com/articles/20170405 You can learn more about the privacy practices and policies of Twitter by visiting their Privacy Policy page: https://twitter.com/privacy

Facebook: You can learn more about interest-based advertising from Facebook by visiting this page: https://www.facebook.com/help/164968693837950

To opt-out from Facebook’s interest-based ads follow these instructions from Facebook: https://www.facebook.com/help/568137493302217

To see more about Facebook’s participation in the Digital Advertising Alliance please visit the Choices section of this notice.

For more information on the privacy practices of Facebook, please visit Facebook’s Data Policy: https://www.facebook.com/privacy/explanation

Instagram: To opt-out from Instagram’s interest-based ads follow these instructions from Instagram: https://help.instagram.com/615366948510230

For more information on the privacy practices of Instagram, please visit Instagram’s Data Policy: https://help.instagram.com/155833707900388

Payment Providers:

We may provide paid products and/or services within the site. When we do, we use third-party services for payment processing (e.g. payment processors). We will not store or collect your payment card details. That information is provided directly to our third-party payment processors whose use of your personal information is governed by their own privacy notice. The payment processors we work with adhere to the standards set by PCI-DSS as managed by the PCI Security Standards Council, which is a joint effort of brands like Visa, Mastercard, American Express and Discover. PCI-DSS requirements help ensure the secure handling of payment information.

The payment processors we work with are: (Paypal https://www.paypal.com/us/webapps/mpp/ua/privacy-full)

  • To comply with legal process or to protect GRINB Foundation.  If we believe that disclosure is reasonably necessary to comply with a law, regulation, legal or governmental request; to enforce applicable terms of use, including investigation of potential violations thereof; to protect the safety, rights, or property of the public, any person, or GRIN2B Foundation as required by law; or to detect, prevent, or otherwise address, security or technical issues or illegal or suspected illegal activities (including fraud).
  • Business Transfers. We may engage in a merger, acquisition, bankruptcy, dissolution, reorganization, or similar transaction or proceeding that involves the transfer of the information described in this Policy.  In such transitions, customer information is typically one of the business assets that is transferred or acquired by a third party. In the unlikely event that we or substantially all of our assets are acquired or enter a court proceeding, you acknowledge that such transfers may occur and that your personal information can continue to be used as set forth in this privacy policy.

Storing your personal data/Transfer of Data

This site is operated in the United States. If you are located in another jurisdiction, please know that your information will be transferred to, stored, and processed in the United States. By using this site and providing us with information, you consent to this transfer, processing and storage of your information in the United States. It is important to note that the privacy laws in the United States may not be as comprehensive as those in other countries such as the European Union. Our service providers use appropriate safeguards to transfer your personal data to the United States.

  • The transmission of information via the internet is not completely secure and therefore we cannot guarantee the security of data sent to us electronically and the transmission of such data is entirely at your own risk. Where we have given you (or where you have chosen) a password so that you can access certain areas of our site, you are responsible for keeping this password confidential.

Third party links

We may have links on our site to other sites that we do not operate. If you click on a third-party link, you will be taken directly to that site which is governed by its own privacy notice. We strongly encourage you to read that privacy notice. We do not control that site and assume no responsibility for the content, policies or its practices.

Choices and Individual Rights

We aim to take reasonable steps, so you can correct, amend, delete or limit the use of your Personal Data.

We outline your choices below:

  • E-mail.  As described above, if you do not wish to receive e-mails from us, you may opt out at any time.
  • Cookies.  Your browser’s help function should contain instructions on how to set your computer to accept all cookies, to notify you when a cookie is issued, or to not receive cookies at any time.
  • Advertising. You can opt out of online targeted advertising by opting out within the advertisement itself or by visiting Digital Advertising Alliance, http://www.aboutads.info/, the Digital Advertising Alliance of Canada in Canada http://youradchoices.ca/ or the European Interactive Digital Advertising Alliance in Europe http://www.youronlinechoices.eu/. You can also opt out of the Digital Advertising Alliance using your mobile device settings.
  • Your rights under certain circumstances. To initiate any of these actions please contact us at info@grin2b.com.
    • To access and receive a copy of the Personal Data we hold about you.
    • To rectify any Personal Data held about you that is inaccurate
    • To request the deletion of Personal Data held about you
    • You have the right to data portability for the information you have provided to us.  You can request to obtain a copy of this information in a commonly used electronic format so that you can manage and move it. We will need to verify your identity before being able to respond to such requests.
    • Please note that in some cases, we may not be able to remove your personal information, in which case we will let you know if we are unable to do so and why.
  • Right to Lodge a Complaint.  For European Union residents, if you feel that our processing of your personal data infringes on data protection laws, you have a legal right to lodge a complaint with a supervisory authority responsible for data protection. You may do so in the EU member state where you habitually reside, your place of work or the location of the alleged infringement. If you are located outside of the European Union, you may have rights under privacy laws in the jurisdiction where you live.

Security

We use reasonable administrative, logical, physical and managerial measures to safeguard your personal information against loss, theft and unauthorized access, use and modification. Unfortunately, no measures can be guaranteed to provide 100% security. Accordingly, we cannot guarantee the security of your information.

Retention

GRIN2B Foundation will retain your Personal Data only for as long as is necessary for the purposes set out in this Privacy Notice. We will retain and use your Personal Data to the extent necessary to comply with our legal obligations (for example, if we are required to retain your data to comply with applicable laws), resolve disputes, and enforce our legal agreements and policies.

GRIN2B Foundation will also retain Usage Data for internal analysis purposes. Usage Data is generally retained for a shorter period of time, except when this data is used to strengthen the security or to improve the functionality of our Service, or we are legally obligated to retain this data for longer time periods.

Our policy on children’s information

Our site is not directed to children under 16. If you learn that your minor child has provided us with personal information without your consent, please contact us.

Contacting us

We welcome any queries, comments or requests you may have regarding this policy please do not hesitate to contact us at info@grin2b.com.