Welcome to the Hughes Syndrome - APS Support]Community for support of [insert condition]!
We’re very glad you have chosen to be a part of our community. The Hughes Syndrome - APS Support community - offered by the GHIC and HealthUnlocked - supports individuals affected by Hughes Syndrome/APS - (Antiphospholipid Syndrome).. Whether you are an individual who has been diagnosed, a care-partner, family member, or friend, we hope this community is a safe and supportive place for you to share your experiences and find information and support
The guideline highlights:
• Be kind, respectful, and understanding of one another
• Post from your own experience - “For me, this worked…” rather than “You should do this…”
• This is a space for emotional support - keep the medical advice to the professionals
• Only share third-party information from credible sources and site your source
.• No political content - Let's focus on individual health experiences
• This community should not be used for commercial or personal promotion - no selling, no fundraising, no spam
• If you see something you’re concerned about, use the reporting functionality to flag it to the moderation team
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This community is moderated by Hughes Syndrome - APS Support.
The Hughes Syndrome - APS Support community is part of HealthUnlocked, a network of over 500+ conditions and wellness communities from organisations you know and trust. By using this community on HealthUnlocked, you are accepting these posting guidelines and agree to HealthUnlocked’s Terms of Use. Members of the [community name] should read the terms in conjunction with the Hughes Syndrome - APS Support Community Guidelines outlined below.
HealthUnlocked’s Terms of Use: support.healthunlocked.com/...
Below are the Hughes Syndrome - APS Support] Community Guidelines, which are aimed at creating and maintaining a safe and supportive community for all of our members.
Professional Health Information:
The Hughes Syndrome - APS Support Community strives to provide useful, up-to-date information on matters of concern to individuals within the Hughes Syndrome - APS Support community. The information posted on this site should not be used as a means of diagnosis, determining treatment, nor replace the relationship between you, your doctors and other healthcare professionals. For diagnosis and treatment options, you are urged to consult your physician.
Community Atmosphere:
The Hughes Syndrome - APS Support Community is a safe, supportive, informative, and friendly community for people affected by Hughes Syndrome/APS/Antiphospholipid Syndrome. Your participation in this community should be with respect, honesty and in the spirit of supporting and learning from fellow members.
Please note that while GHIC is an organisation based in the United Kingdom, members may be located worldwide. As such, details on approved medications, treatment protocols, healthcare, insurance, and other related topics may differ and should always be verified depending on your specific location.
Posting Content (Posts/Questions/Replies/Private Messages):
Content posted by individual members does not represent the views of the [organisation] or HealthUnlocked.
Posting content on this community is taken as your agreement to post information that is true and accurate to the best of your knowledge, and is primarily drawn from personal experience. You are encouraged to post content about your own experience with [Hughes Syndrome/APS] (or that of a loved one), ask questions, and offer support and advice.
Remember that content in this community does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Content should never be abusive, derogatory, sexually explicit or suggestive, deliberately misleading, unsafe or contain spam. If you believe someone else’s content violates this rule, please report it via the “Report” button. Content that is felt to violate this policy or Terms of use will either be edited or removed. All reports are read by admins and moderators and it is their judgement on what action, if any, is taken.
Neither GHIC nor HealthUnlocked is responsible for any offence or injury that a member may draw from another member’s content.
Any content posted on this community can be read, used, reproduced, and cited by other users of the site. You have the option to delete content you posted.
When you post third-party information, such as information about new treatments, you are asked to provide references and links to sources wherever possible. Please ensure links are to a reputable site.
Moderating Content:
Content posted on this community is moderated by [organisation] and might be escalated to HealthUnlocked if necessary. Moderation occurs only after content is posted.
Moderation helps maintain a safe, positive environment for all members of the community. If there is a breach of these Community Guidelines or HealthUnlocked’s Terms of use:
- Content may be edited or removed to ensure that the community remains supportive and responsive for all members.
- Members may be temporarily or permanently restricted from the community.
The community is open 24 hours a day, 7 days a week. Moderation occurs after posting and primarily between the hours of [9 AM and 5 PM GMT Monday through Friday].
Solicitations:
Please note that [organisation] does not endorse or recommend any specific products, services, therapies, or activities mentioned by any third party (individual or company).
Commercial content or excessive self-promotion will be removed from the community.
Online Safety:
In this community, there may be discussions of health-related issues and sharing of personal information.
Please note that the Hughes Syndrome - APS Support Community is an open site, meaning that any posts are searchable by internet search engines and can be shared via social media platforms. The default setting of posts allows them to be visible to individuals who are not members of the community. If you would rather your content was not searchable, you can change the visibility of your post by selecting "Only community members" before clicking submit. This will result in only the post title and first line of text being visible to those who are not members of the community. However, doing this will limit the number of people who will find and benefit from the information you have shared. We suggest members leave posts open for everyone to find if they are comfortable doing so to ensure more people find communities and benefit from the wealth of information on HealthUnlocked.
For your own safety, you should not disclose personal information such as your full name, email address, home address, telephone number, or any other information which could directly or indirectly identify you. (We do not advise identifying personal photographs)
For more information on general online safety guidelines please visit: ico.org.uk/for-the-public/o...
MaryF with KellyInTexas HollyHeski lupus-support1
Does anyone with APS (Hughes Syndrome) have any suggestions for improving memory or concentration?
CAPS/Asherson's survivors
Trust me I'm a doctor follow up email - Awareness raised... ;)
Dabigatran approved by NICE
