These guidelines are for members who have joined the Sticky Blood – Hughes Syndrome Support Forum (SB-HS), which has been set up to help all those people who have Sticky Blood - Hughes Syndrome (Antiphospholipid Syndrome) or Sero-Negative APS (SN-APS), their families, friends and carers.
This HealthUnlocked.com/Sticky Blood - Hughes Syndrome Support site is a simple and effective way to communicate and support each other and help spread awareness about this condition.
This site is moderated by the SB-HS Support Forum Admin Team, who are all volunteers. SB-HS Support reserves the right to update and/or amend these Guidelines at any time without notice.
Members/Users of this SB-HS Support HealthUnlocked site must read and follow these Guidelines, which cover the whole of this site.
Please take a moment to read them and become familiar with their content:
Content on this site, unless by member/user clearly marked as a representative of SB-HS Support, is a member’s/users personal experience or opinion only and does not represent the views of SB-HS Support.
1. The SB-HS Support Admin team reserves the right to delete any post they judge inappropriate without notifying the author. The member/user may be informed of the reason the post was deleted and be invited to rewrite their post.
2. The SB-HS Support Admin team reserves the right to restrict any member/user. An explanation may be provided via the Personal Message (PM) system.
3. The SB-HS Support Admin team reserves the right to request that HealthUnlocked remove a member/user from the register. An explanation may not be provided.
4. SB-HS Support reserves the right to refuse membership to the HeathUnlocked.com/SB-HS Support site.
5. Please report any abusive or inappropriate posts.
6. All members/users should conduct themselves at all times with respect and honesty.
7. People posting and/or answering questions on the site should not assumed to be health professionals.
8. Posts, replies and comments should be designed to support, not replace, medical advice.
9. We want all members/users to be comfortable posting here. In order to ensure that any post does not cause alarm, harassment or distress to any person (whether intended by the poster or not), it may be removed. Religion and Politics should not be discussed here.
10. Members/users posting on SB-HS Support must only post information, which is true and correct to their knowledge. If relevant, please provide references to health or medical information.
11. Do not breach copyright rules by placing documents onto the SB-HS Support site unless you have permission from the author of the document. You can, however, post excerpts with links to the full text of the document. If you are unsure, please contact SB-HS Support Admin via PM.
12. If you post a link, please at least explain briefly what people can expect to find if they follow the link. Links without such an introduction/explanation may be deleted. Links to other Forums are not allowed unless they are on the HealthUnlocked platform and will be deleted without notice or discussion.
13. If possible, show a clear distinction between personal experience or opinion and evidence-based information.
14. SB-HS Support cannot be held responsible for the content of any external websites.
15. Do not post any of your personal contact details on the main board such as, but not limited to email addresses or phone numbers. If you decide to share personal information in private messages please consider carefully yours and others personal safety at all times by not repeating identifiable information on the main board. Do not send unsolicited private messages (PM’s) to other members unless you have stated in a post, on the main board that you intend to send a member a PM. If members receive unsolicited PM’s, they should report them to a SB-HS Support Admin or HU immediately. SB-HS Support cannot be held responsible for the content of private messages or the action taken as a result of any such message. The messaging system (PM’s) cannot be accessed by SB-HS Support Admins, only by HealthUnlocked.
16. Please consider your personal privacy at all times. Username choice should not include any part of your real names. Members who choose inappropriate usernames will have their accounts restricted until they are changed to the satisfaction of SB-HS Support Admin.
17. No personal identifiable photos should be posted. Photos of children or babies are strictly prohibited
18. Any post considered to be advertising will be edited and/or deleted at the discretion of the SB-HS Support Admin team.
19. Any post that appears to be asking for money, except for fundraising for an approved Charity, will be edited and/or deleted at the discretion of the SB-HS Support Admin team.
20. Do not name and shame identifiable individuals.
21. Do not solicit members/Users to other websites or forums for your own purposes either via posts or the messages (PM) system. This will result in immediate restriction and you could be removed from the HU platform.
22. Do not post details of online pharmacies or any information of any sort offering medication without prescriptions. Do not offer to give away your unwanted medication or offer them for sale to anyone.
23. You may post the non-personal contact details of doctors, specialists or other health professionals to encourage members/users to find helpful medical support. All members/users should understand that such comments are personal and subjective and are not an endorsement by SB-HS Support unless indicated otherwise by a SB-HS Support representative. A list of patient recommended Hughes Syndrome Specialists can be found under "Pinned Posts" on the main SB-HS Support board.
24. You may not post negative or aggressive remarks about identifiable doctors, specialists or other health professionals.
25. All content can be read, used, reproduced and cited by all for non-commercial purposes.
Finally, and most importantly, our family is based on respect and support, so feel free to give and receive all that you can! It can make the world of difference!
**** Please do not hesitate to contact a member of the Admin team via PM if you have any questions about our Guidelines ****