Privacy Policy

Privacy Policy

This World Wide Web site located at (“Site”) is offered by Hope for Hypothalamic Hamartomas (“Hope for HH,” “we,” “us,” or “our”) to you (“you,” “your,” and “user”) for your personal use and information. We want to protect the privacy of users accessing and using the Site. The information you voluntarily 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”) governing the Site.

1. Collection Of Web Server Traffic Pattern Information

We may collect and/or track the following information: (a) the Internet Protocol addresses for system administration and auditing Site usage; (b) home server domain names, email addresses, type of client computer, and type of Web browser of users to this Site, (c) the email addresses of users that communicate with us via email, (d) user-specific information on what pages users access or use; and (e) any other information you provide to us through the Site.

We may also use Internet cookies and other types of clickstream data on users’ hard drives. Internet cookies save, among other things, the user’s name, password, user-name, screen preferences, and the pages of the Site viewed by the user. Internet cookies are stored on the user’s hard drive and are not stored, in any form, by us. Users may decline the Internet cookies by using the appropriate feature of their Web client software, if available. However, please be aware that if you block cookies, some Site functionality may be lost.

2. Use and Disclosure of Personal Information

Personal data, including without limitation your name, address, email address telephone number, and diagnosis/treatment information (“Personal Information”), that is collected will not be shared with third parties in a personally-identifiable form but may be used for purposes including without limitation 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 request/inquiries, for editorial and feedback purposes, for marketing and promotional purposes, for a statistical analysis of user behavior, for content improvement, and to customize content and layout of the Site. In addition, Personal Information collected may be added to our databases and used for future calls and mailings regarding Site updates, new information and services, fundraising requests, and other announcements. We will not sell, exchange or publish your Personal Information without your permission.

Personal Information may be needed for registration with the Site, and/or participation in the public forum that we make available to our users (“Forum”).

Forum: If you choose to participate in the 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 Personal Information.

To discontinue participation in the Forum, or unsubscribe from Hope for HH email or mail correspondence, please contact our system administrator (

3. 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.

4. Protection of Financial Information

Hope for HH uses PayPal to accept donations. Please refer to for more information about PayPal’s security and terms and conditions.

5. 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 anytime by contacting us ( 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.

6. Access to and Ability to Correct Personal Information

Upon request via email (, 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.

7. Our Right to Contact User

We reserve the right to contact Site users regarding this Privacy Policy, Terms and Conditions, or any other policies or agreements relevant to this Site.

8. Our Right to Change Privacy Policy

We reserve the right to change this Privacy Policy at any time with or without notice. It is your responsibility to check back to this Site to review revisions and changes to this Privacy Policy. Specifically, we encourage you to review this Privacy Policy each and every time you visit the Site.

9. Breach of Personal Information

In the case of breach, such as unauthorized acquisition and access of your Personal Information, we will notify you at the email address you provided.

10. Questions

If you have any questions regarding this Privacy Policy, contact us (