Social Media Policy

Last Updated: 25 January 2021

1. Facebook

The official Hope For Hypothalamic Hamartomas (Hope For HH) Facebook page was created to provide people with an interest in Hope For HH information about our nonprofit organization. This page is monitored and managed by Hope For HH. To learn more about Hope for Hypothalamic Hamartomas (Hope For HH) visit https://www.hopeforhh.org/.

We encourage you to share your thoughts and ideas on topics being discussed but have rules in place to encourage civil discourse and prevent anything that might impede the purpose of our Facebook site. Our purpose is to convey important information pertaining to individuals with HH, their families and caregivers.

Before posting on this page, please review the terms below: 

  • A posting on this page constitutes acceptance of these terms.
  • Hope For HH reserves the right to delete any content without warning or explanation.
  • “Friending/Likes” between Hope For HH and businesses, organizations and/or causes do not indicate endorsement of that business’, organization’s and/or cause’s actions or comments.
  • Hope For HH reserves the right to remove and/or block anyone who posts any material Hope For HH feels is not appropriate or otherwise violates these terms of use.
  • Hope For HH reserves the right to delete any posts by individuals, businesses, organizations and/or causes deemed by Hope For HH  to be an advertisement or intended to advance the same.
  • Hope For HH reserves the right to remove any comments that are inappropriate or offensive including comments that:
    • defame, abuse, harass, stalk, threaten or violate the legal rights of others
    • include racism, hatred, slander, threats, obscenity, violence, vulgarity, spam or advertisements
    • have personal information about another person or that violate a person’s privacy interests
    • include copyrighted material belonging to another person
    • contain links to other websites
    • condone or promote unlawful activity

2. Twitter

The official Hope For Hypothalamic Hamartomas (Hope For HH) Twitter account was created to provide people with an interest in Hope For HH information about our nonprofit organization. This page is monitored and managed by Hope For HH.

3. YouTube

The official Hope For Hypothalamic Hamartomas (Hope For HH) YouTube account was created to provide people with an interest in Hope For HH information about our nonprofit organization. This page is monitored and managed by Hope For HH.

4. Instagram

The official Hope For Hypothalamic Hamartomas (Hope For HH) Instagram  account was created to provide people with an interest in Hope For HH information about our nonprofit organization. This page is monitored and managed by Hope For HH.

Before commenting on a photo, please read the terms of use below:

  • Commenting on a photo constitutes acceptance of these terms.
  • Hope For HH reserves the right to delete any content without warning or explanation.
  • “Friending/Likes” between Hope For HH and businesses, organizations and/or causes do not indicate endorsement of that business’, organization’s and/or cause’s actions or comments.
  •  Hope For HH reserves the right to remove and/or block anyone who posts inappropriate material as determined by Hope For HH.
  • Hope For HH reserves the right to delete any comments by individuals, businesses, organizations and/or causes deemed by Hope For HH to be an advertisement or intended to advance the same.
  • Hope For HH reserves the right to remove any comments that are inappropriate or offensive including comments that:
    • defame, abuse, harass, stalk, threaten or violate the legal rights of others
    • include racism, hatred, slander, threats, obscenity, violence, vulgarity, spam or advertisements,
    • have personal information about another person or that violate a person’s privacy interests
    • include copyrighted material belonging to another person,
    • contain links to other websites
    • condone or promote unlawful activity 

5. LinkedIn

The official Hope For Hypothalamic Hamartomas LinkedIn account was created to provide people with an interest in Hope For HH information about our nonprofit organization. This page is monitored and managed by Hope For HH.

6. Facebook Groups

The Purpose

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

b. All groups moderated by Hope For HH follow the same procedures and Terms of Use.  

Administration of the Group

a. The administrators of the groups, at all times, will be one or more of the current board members of Hope For HH  and may include a designated Hope For HH volunteer.

Requirements for Joining the Group

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

b. You will need to request to join the Facebook group. A group admin will then work to confirm your identity and admit you into the group. If you do not receive notification of your approval in 2-3 business days please direct message the Hope For HH at info@hopeforhh.org.

c. Our administrators may ask for additional identifying information in order to verify that you are a real person who could be located outside of Facebook. Requests that can not be verified will be deleted after 30 days.

d. In order to join Hope For HH moderated support groups on Facebook and to allow all of our members to feel they are part of an authentic community, Hope For HH requires that participants use a Facebook account that does not conceal their true identity. Facebook accounts that do not meet the guidelines below will not be permitted to join the group:

  • The name on your profile should be the name that you use in everyday life.  
  • Pseudonyms, aliases, or assumed names are not permitted.
  • Nicknames can be used as a first or middle name if they’re a variation of your authentic name (like Bob instead of Robert).
  • You may list another name on your account if it has a direct affiliation to you (example: maiden name).
  • You may not pretend to be anything or anyone other than yourself.
  • Your account name may not contain offensive or suggestive words of any kind. 

e. The intent of this policy is to protect the group from imposters. If at any time the administrators become aware that a particular group member has falsified his or her identity, they will be removed from the group. The administrators may occasionally allow someone outside of these requirements to join the group for a variety of reasons. The decision whether or not to allow such individuals to join the group is solely at the administrators’ discretion.

Requirements for Posting in the Group

a. All posts and comments in the group must be courteous and respectful to other group members. If the administrators 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 member of the group post 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 group members via Facebook message or any other form of communication unless the group member 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 a group member 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 member of the group post any information that is untrue or misleading in any material respect. Nor may any member of the group provide false or misleading information to other group members via Facebook message or any other form of communication. The administrators, in their sole discretion, may elect to remove any post or comment that violates this policy or to remove any member of the group who has falsified information.

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

e. If a post or comment is removed from the group, the group member whose post or comment is removed will be notified of the removal by the administrators. The administrators may ask the group member to explain his or her conduct. If the group member fails to provide an adequate explanation or, thereafter, posts another message or comment that violates the policies described above, the administrators, in their sole discretion, may remove the group member from the group.

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

Privacy

a. Although the Hope For Hypothalamic Hamartomas (Hope For HH)  groups are a “closed” group and, as such, posts can only be viewed on Facebook by other group members, the Hope For Hypothalamic Hamartomas organization cannot prevent other group members from sharing any information that you post 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 with the group. We may also report to Facebook or other organizations about improper or unlawful user activities, and this reporting may include disclosure of personal information relating to those individuals conducting such improper or unlawful activities. For additional information visit our Privacy Policy.

Limitation on Liability

a. The Hope For Hypothalamic Hamartomas (Hope For HH) groups 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. Social Media Policy Updates

This Social Media Policy was lasted updated on 25 January 2021.

We update the Social Media Policy from time to time, so please review it regularly.  If we materially change our Social Media 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 admin@hopeforhh.org

9. Please review our other policies