TSB Social Media Guidelines

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Please note these apply to all our Facebook Groups.

 

Welcome if you've just become a member of our Silent Bleed Superficial Siderosis Facebook groups. Please read all of the conditions below, members are subject to these rules.

 

We offer guidance and support to those with Superficial Siderosis, their families, friends, carers and physicians. The page, and the linked website (www.thesilentbleed.co.uk) were developed to aid those with this rare neurological condition to share, network and find further information and to this end, we have become registered as a charity. Please go to our website for more information on the condition, what we do and how to support us.

 

This is a closed group and a safe place for our members to discuss their symptoms, treatment, progress and whatever else keeps them motivated or gets them down. We are an open, friendly group but we need to remember to respect each other so that this remains a trustworthy place to come and share.

 

Just a few rules:

 

Please do not engage in advertising, selling or promoting drugs/treatments/alternative therapies without first checking with Admin. If you do, you and your post will simply be removed. 

 

However, sharing everyday stories of what has helped you or your loved one is a different matter – most of us suffering from this condition are on a different cocktail of pharmaceuticals, so comparing and contrasting therapies is of benefit to all members. The difference is talking about what is working or not working for you personally, not promoting something that you claim will work for everyone.

 

Qualified physicians in the field are very warmly welcomed – we are grateful for Dr Levy’s ongoing input. If you are a doctor and new to the group, please make yourself known to Admin when you ask to join.

 

All official enquiries should go through the website  www.thesilentbleed.co.uk. If you are a journalist and want to know more about the condition and those fighting it, please don’t use the Facebook page to contact them. Again, it’s about respect and trust - so come to us first. Thank you.

 

Blocking an Admin will result in your removal from the group.

 

Please report any offensive or abusive posts to Admin. The management will investigate this and decide on the action to be taken.

 

You read/participate in this page of your own free will. Silent Bleed cannot be held responsible for comments from others. Please read and share comments responsibly.

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Everyone using our Facebook groups is under considerable strain, not to mention possibly suffering from a condition that may impair cognitive function. We all have our vulnerabilities. Please remember to be kind, courteous and compassionate with other users.

 

The Silent Bleed team reserve the right to remove any posts or members for breach of the above rules or a perceived breach of the rules. We have many groups and pages related to the Silent Bleed, removal from one group is removal from all.

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Some of the rules may seem a little heavy-handed but we’re a friendly, helpful bunch and we’d like to keep it that way. Please feel free to contact one of the Admins if you have any questions.

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Jason Roberts and Amanda Fearn

Founders, TSB

 

Created 21/12/16

Updated 3/11/23