Last Updated: 25 January 2021

1. The Purpose

a. The Hope For Hypothalamic Hamartomas virtual events were established by Hope For HH for individuals, parents, caregivers, and families impacted by hypothalamic hamartomas. The purpose of these events is to create a community where affected individuals and families can turn for support and guidance from others in similar circumstances

b. All virtual events moderated by Hope For HH follow the same procedures and Virtual Event Policy.

2. Moderation of the Events

a. The moderators of events, at all times, will be one or more of the current board members of Hope For HH or a designated Hope For HH volunteer.

3. Requirements for Attending an Event

a. You agree to the “Virtual Event Policy” and the “Social Media Policy” for our events. We respect your privacy and information submitted in this form will not be shared with third parties outside of  Hope For HH.

4. Requirements for Participating in Event

a. All posts and comments during the event must be courteous and respectful to other event attendees. If the moderators determine that a post, comment, or thread lacks (or could be construed to lack) the requisite courtesy and/or respect, they may elect to remove the post, comment, or thread from the group.

b. At no time should any attendee of the event any identifying personal information, such as his or her address, date of birth, social security number or credit card information. Such information similarly should not be shared with other event attendees via message or any other form of communication unless the event attendess providing the information has a relationship with the recipient outside of the group and/or has some independent method of verifying his or her trustworthiness. Should an event attendee elect to share such personal information, Hope For HH is not liable for any loss or injury incurred as a result.

c. At no time may any attendee post any information that is untrue or misleading in any material respect. Nor may any attendee provide false or misleading information to other attendees via message or any other form of communication. The moderators, in their sole discretion, may elect to remove any post or comment that violates this policy or to remove any event attendee who has falsified information.

d. Event attendees may not use the event to promote fundraisers or solicit donations for organizations other than the Hope For Hypothalamic Hamartomas organization. The moderators, in their sole discretion, may elect to remove any post or comment that violates this policy.

e. If any event attendee has concerns about the propriety or veracity of posts or comments made by another attendee, he or she should send a message expressing his or her concerns to one or more of the moderators. The moderators take all such reports seriously and will do their best to investigate the matter.

5. Privacy

a. Although the Hope For Hypothalamic Hamartomas (Hope For HH)  events are closed to only attendees who have received the login details, the Hope For Hypothalamic Hamartomas organization cannot prevent other attendees from sharing any information with third parties. Additionally, we reserve the right to cooperate with local, state, and national authorities in investigations of improper or unlawful activities, and this may require the disclosure of your posts, comments, or any other personal information that you have shared during the event. For additional information visit our Privacy Policy.

6. Limitation on Liability

a. The Hope For Hypothalamic Hamartomas (Hope For HH) events do not provide medical advice, and at no time should you rely on any information provided in the group in lieu of seeking medical care from a physician. Similarly, statements made by members of the Hope For HH Group(s) do not reflect the views or opinions of the Hope For Hypothalamic Hamartomas organization or any of its officers or directors, and the Hope For Hypothalamic Hamartomas organization shall not be liable for any injury or damages you may suffer as a result of your reliance on any information posted in the group, including information posted by the group’s administrators.  For additional information visit our Medical Disclaimer.

7. Virtual Event Policy Updates

This Virtual Event Policy was lasted updated on 25 January 2021.

We update the Virtual Event Policy from time to time, so please review it regularly.  If we materially change our Virtual Event 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.

8. Contacting Us

We welcome any questions, comments, or concerns you may have regarding this Social Media Policy.  Please do not hesitate to contact us by email at

9. Please review our other policies