KCNQ2 Cure Social Media Policy

Terms of Use for the KCNQ2 Support Group

1) Purpose of the Group

a) The KCNQ2 Encephalopathy Parent Group is a Facebook group established by the KCNQ2 Cure Alliance for parents and primary caregivers of children with KCNQ2 developmental and epileptic encephalopathy. The purpose of the group is to create a community where affected families can turn for support and guidance from others in similar circumstances

b) All support groups and discussion forums moderated by KCNQ2 Cure Alliance follow the same procedures and Terms of Use.

2) Administration of the Group

a) The administrators of the groups, at all times, will be two or more of the current board members of KCNQ2 Cure Alliance.

3) Requirements for Joining the Group

a) You must fill out the form to enroll in the KCNQ2 Family Connections and agree to the “Terms of Use” for our support groups. We respect your privacy and information submitted in this form will not be shared with third parties outside of the KCNQ2 Cure Alliance.

b) You will need to request to join the Facebook group here. 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 5 business days please direct message the KCNQ2 Cure Alliance page here.

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 cannot be verified will be deleted after 30 days.

d) In order to join the KCNQ2 Cure Alliance - moderated support groups on Facebook and to allow all of our members to feel they are part of an authentic community, the KCNQ2 Cure Alliance 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.

f) The administrators may occasionally allow someone outside of these requirements to join the group for a variety of reasons. The decision of whether or not to allow such individuals to join the group is solely at the administrators’ discretion.

4) 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, the KCNQ2 Cure Alliance 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 KCNQ2 Cure Alliance. 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.

5) Privacy

a) Although the KCNQ2 Encephalopathy Parent Group is a “closed” group and, as such, posts can only be viewed on Facebook by other group members, the KCNQ2 Cure Alliance 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.

6) Limitation on Liability

b) The KCNQ2 Cure Alliance Support Group does 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 KCNQ2 Cure Alliance Support Group do not reflect the views or opinions of the KCNQ2 Cure Alliance or any of its officers or directors, and the KCNQ2 Cure Alliance 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.