Privacy

When we set up this group, we made a decision to allow people who found us via our website or Google searches on Hughes Syndrome for example, to be able to see how helpful this space is for them. We wanted them to be encouraged to join as members too so that they would add their own 'voice' to the community and share their experiences with us.

We also know however that some people may prefer that others have already shown some commitment before they're able to read their posts. This commitment we suppose will be by registering on the site.

The good thing about this community is it allows for both.

If you don't want your blog or question to be viewable by others before posting, you simply have to click in the posting form where it says that it's for members of this community only. You'll see a little padlock next to your post afterwards.

However, please use the "padlock" with discretion, only when you really think it is important for it to be restricted to the Hughes Syndrome Foundation community. It is by means of online discussion groups that many isolated Hughes Syndrome patients find people who have shared their experiences and can benefit from the knowledge and advice of others.

Once they have found the HealthUnlocked site and seen the benefits, they are likely to register.

Paddy

1 Reply

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  • Yes you have put the idea of 'balance' with this, into very good words paddy. Mary F x

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