Hope For HH Privacy Policy

Last Updated: 21 March 2019

Hope for Hypothalamic Hamartomas (“Hope for HH,” “we,” “us,” or “our”) offers this website located at http://www.hopeforhh.org (the “Site)” to you (“you,” “your,” and “user”) for your personal use and information.  We want to protect the privacy of users accessing and interacting with the Site.  The information you share with us will be used to improve the quality of our services, and to promote public understanding and education about the impact of hypothalamic hamartomas on people’s lives.  We have adopted the following privacy policy (“Privacy Policy”) to govern the Site.

This Privacy Policy does not apply to any information collected outside of the Site, including offline or through other means (for example, via telephone, in person, via mail).

By using the Site, you accept and agree to the practices that this Privacy Policy describes.

1. Information We Collect

When you visit the Site, we may collect and use personally identifiable information about you, as well as other information.  “Personally Identifiable Information” may include your name, address, email address, and other similar information that can be used to identify you.  We may also collect and/or track usage information, which is information generated automatically as you navigate through the Site.  More specifically, when you use the Site, we may collect and/or track:

  • Details of your visit to the Site and the resources you access, including, but not limited to, traffic data, location data, and other communication data, including your Internet Protocol address, browser type, the date and time you accessed or left the Site, and which pages you viewed.
  • Information that you provide directly to us by filling in forms on our Site, including your name, email address, street address, telephone number, or other information.
  • Information provided when you communicate with us for any reason, including information you provide in any emails to us.

Cookies

We and our vendors, consultants, agents, and other service providers (collectively, “Service Providers”) may collect and store your usage information in log files as well as through the use of cookies, web beacons, pixel tags, embedded scripts, and other tracking technologies now and hereafter developed (“Tracking Technologies”).  We use Tracking Technologies to, among other things, better serve you with more tailored information for our services, and for those of third parties, facilitate your ongoing access to and use of the Site, and collect and store information about your use of the Site.  Users may decline the use of cookies by resetting their web browser.  However, please be aware that if you block cookies, some Site functionality may be lost.  Please view our Cookie Policy for more details.

2. Use of Your Information

We use the information we collect from you primarily to enable us to provide our service to you in the best possible manner.  Personally Identifiable Information may be added to our database and used for future calls and mailings regarding Site updates, new information and services, fundraising requests, and other announcements.  In addition, your information may be used for the following purposes:

  • To protect our rights, property, or to enforce the Terms and Conditions of this Site;
  • To comply with laws, regulations, court orders, or other legal processes;
  • To contact you or otherwise respond to your requests and/or inquiries;
  • For editorial and feedback purposes;
  • For marketing and promotional purposes;
  • For a statistical analysis of user behavior;
  • To improve the content of our Site;
  • To customize the content and layout of the Site;
  • To administer the Site, including by monitoring and analyzing our Site traffic and usage patterns.

Additionally, your Personally Identifiable Information may be needed for registration with the Site and/or participation in any public forums that we may make available to our users (a “Forum”).  If you choose to participate in a Forum, please remember that any information that you disclose in these areas becomes public information.  You should exercise caution when deciding whether or not to disclose your Personally Identifiable Information.

To discontinue participation in a Forum, or to unsubscribe from Hope for HH email or mail correspondence, please contact our system administrator (admin@hopeforhh.org).

3. Sharing Your Information

Except as set forth hereafter, we will not sell, exchange or publish your Personal Information without your permission.  We may share your Personally Identifiable Information with trusted third parties or our affiliates to:

  • Assist us in providing our services to you, including by acting on our behalf to send postal mail and email, remove repetitive information from mailing lists, analyze data, provide marketing assistance, process credit card payments, and provide website assistance;
  • Compile statistics and reports regarding our audience and the visitors of our Site and services; or
  • Deliver interest-based emails.

Such third parties have access to Personally Identifiable Information as needed to perform their functions, but they are not allowed to use it for other purposes.

Other Circumstances: We may disclose your Personally Identifiable Information to third parties if we have a good faith belief that disclosure is necessary to:

  • Comply with applicable laws, regulations, legal process (such as a subpoena), or enforceable government request; or
  • Protect against harm to our rights, property, or safety, our visitors, or the public as required or permitted by law; or
  • Fulfill our obligations as part of any actual or proposed purchase, merger or acquisition of any part of our business, provided that use of such Personally Identifiable Information shall be limited to those purposes disclosed in this Privacy Policy.

4. Use and Disclosure of Anonymous Information

All information that is not personal to you or someone else, including without limitation questions, comments, ideas and suggestions (“Anonymous Information”) shall be deemed non-confidential information and owned by us. We will not obtain your consent before posting collected data on the Site, or, without limitation, sharing or otherwise disclosing Anonymous Information to third parties. We shall be free to disclose and use the Anonymous Information for any purpose and through any means without any obligations whatsoever to you.

5. Donations

Hope for HH uses PayPal to accept donations.  Please refer to http://www.paypal.com for more information about PayPal’s security and terms and conditions.  On occasions for specific conferences we use Blackbaud to accept payment, donations and registrations.  Please refer to http://www.blackbaud.com for more information about their security and terms and conditions.

6. Security

We place great importance on the security of all Personally Identifiable Information associated with our customers.  We use commercially suitable physical, electronic, and managerial procedures to safeguard and secure the information we collect on our Site.  These procedures include, but are not limited to, firewalls, encryption, intrusion detection, and Site monitoring.  We also limit access to any Personally Identifiable Information we receive to authorized personnel that need access in order to perform their jobs.  However, no data protection procedures are entirely infallible.  As a result, while we strive to protect your Personally Identifiable Information, we cannot guarantee that it will be 100% secure.  Your use of our Site, and therefore your transmission of data to our Site, is done entirely at your own risk.

7. Third Party Websites

Our Site may contain links to other sites, including those of third parties or business partners.  While we seek to link only to sites that share our high standards and respect for privacy, we cannot be responsible for the privacy practices other websites use.  By accessing other third party websites or applications through our Site, you are consenting to the terms and privacy policies of those websites.  It is possible that other parties may collect Personally Identifiable Information about your online activities over time and across different web sites when you use our Site.

8. Access to Personally Identifiable Information

Upon request via email (admin@hopeforhh.org), we will provide to users a summary of any Personal Information retained by us. Users may modify, correct, change, or update their Personal Information or cause their Personal Information to be removed from our database. We will only send personal records to the email address on file for the user name associated with it.  For California residents, please consult the “California Privacy Rights” section above for additional considerations.  For European citizens, please consult the “International Visitors and European Citizen Privacy Rights” section below for additional considerations.

9. International Visitors and European Citizen Privacy Rights

Our Site is hosted and operated in the United States (“US”).  By using the Site, you are consenting to the transfer of your Personally Identifiable Information to the US.  If you are accessing our Site from outside the US, please be advised that US law may not offer the same privacy protections as the law of your jurisdiction.

If you are a European citizen, you have the right to request that we:

  • Provide you with information regarding whether we process your data, including any details relating to such processing;
  • Correct any inaccurate data we may have about you without undue delay;
  • Complete any incomplete information that we may have about you;
  • Under certain circumstances, erase your Personal Data without undue delay;
  • Under certain circumstances, be restricted from processing your data;
  • Under certain circumstances, furnish you with the Personal Data which you provide us within a structured, commonly used and machine-readable format.

Where we process your Personal Data solely on the basis of your consent, European citizens have the right to withdraw consent to our processing Personal Data at any time.  This will not affect the lawfulness of our processing before the withdrawal.  European citizens also have the right to lodge a complaint with their data protection supervisory authority at any time.

The exercise of the above rights might be subject to certain conditions and we might require further information before we can respond to your request.

10. California Visitors

If you reside in California, you have the right to ask us one (1) time each year if we have shared Personal Information with third parties for their direct marketing purposes.  At the present time we do not release information to third parties for marketing purposes.  To make a request, please send us an e-mail (admin@hopeforhh.org).  Indicate in your e-mail that you are a California resident making a “Shine the Light” inquiry.

11. Children’s Online Privacy Protection Act of 1998 (“COPPA”) Compliance

Hope for HH is concerned about the safety of children who use the Internet. We want you and your family to feel secure when visiting the Site. We comply with COPPA. We do not collect or post information from children under the age of 13 (“child” or “children”) unless we have verifiable consent from a parent or guardian. If we have collected information from a child, the child’s parents may access information at any time by contacting us at admin@hopeforhh.org. If the parent requests that we delete their child’s information, we will delete it. We do not and will not provide any personally identifying information collected from children, regardless of its source, to any third party for any purpose whatsoever. No information collected from children is used for any marketing or promotional purposes whatsoever.

12. Opting Out

You may unsubscribe from our marketing communications by clicking on the “unsubscribe” link located on the bottom of our emails or by sending us an email at the address provided below.

13. Privacy Policy Updates

This Privacy Policy was lasted updated on 21 March 2019.

We update the Privacy Policy from time to time, so please review it regularly.  If we materially change our Privacy Policy, we will notify you by posting a notice on the Site.  Your continued use of the Site will be deemed your agreement that your information may be used in accordance with the new policy.  If you do not agree with the changes, then you should stop using the Site and notify us that you do not want your information used in accordance with the changes.

14. Contacting Us

We welcome any questions, comments, or concerns you may have regarding this Privacy Policy.  Please do not hesitate to contact us by email at admin@hopeforhh.org