Community Discussion Group
Guidelines and Rules
FamilieScn2A Facebook Disclaimer:
The opinions of users on this site do not reflect the opinions of FamilieScn2a Foundation. FamilieScn2a is not responsible for other members’ thoughts, feelings, or expressions. Please respect other members and use this site with caution.
1) The purpose of the FamilieScn2A Community Page is to create an online community where affected families can turn to for support and guidance from others in similar circumstances.
2) Administration of this group will be carried out by two or more of the current board members and/or volunteers of the FamilieScn2A Foundation.
3) Administrators will review each member request carefully before approving them into this group. Requests from anyone that is not a parent or caregiver of a SCN2A affected child will generally be blocked or ignored. If you believe that a member has been approved that does not appear legitimate, please message the page administrators immediately with your concern.
4) Administrators have the right and responsibility to remove any member who becomes disruptive in anyway or who does not respect the culture of this group.
5) All posts and comments in the group must be courteous and respectful of other group members.
6) At no time should any member post any identifying personal information (ie: address, date of birth, social security number or credit card information). Should a group member elect to share such personal information, FamilieScn2A is not liable for any loss or injury incurred as a result.
7) At no time may any member of the group post any information that is untrue or misleading in any material respect. Administrators, in their sole discretion, may elect to remove any post or comment that violates this policy or to remove any member who has falsified information.
8) 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.
9) If any group member has concerns about the propriety or veracity of posts or comments made by another member, he/she should send a message expressing his/her concern to one or more of the administrators. All reports will be taken seriously and will be promptly investigated.
10) Posting from members should not substitute for professional medical advice. Never disregard professional medical advice or delay in seeking it because of something you have read on this site. Please consult your physician with any questions or concerns regarding your child’s health.
11) Members of this group all have children with high medical expenses. As a result, you may not post about personal fundraisers within the group. However, if your fundraising efforts are for the FamilieScn2a Research Foundation, please do post so we can all share ideas.
12) In an effort to organize resources for the group and keep the Community feed open for questions and dialogue about the care and well-being of our community members, all external links to resource information (ie: articles, coping resources, blogs, alternative treatments and therapies, etc) should be private messaged (PM) to the page administrators, where they will then be added to the SCN2A LiveBinder. This is an online resource that is open to the public, where all content shared by group members is stored in an organized, easy to use fashion. Frequent updates will be announced on the Community page letting members know of new content on the LiveBinder.
