Main site/forum/kids site suggestions

[nickb]

Hello

The HMSA website needs an overhaul, new articles, a facelift and a general tidy up.

So-what would be on your wishlist?

Please bear in mind that its not like the forum, so we can't keep changing the content once its up there- but all ideas will be given consideration

I'd like ideas in general, but especially for the kids and teens page(s) and the Members only section

[nonyanomemory]

My daughter has suggested that it may be helpful to have information about and direct links to GOSH in the kids section. With possibly a section written by the team at GOSH who deal with HMS/EDS kids.

Will see what we can do

Also perhaps a slight subdivision for younger kids and the older teenager. An epilepsy site my son goes on does this and he prefers to read about the condition now that he is 14 with aspects of life that are relevant to him. Because on the whole he says in primary school things are different to secondary.

The kids site is going to be totally redeveloped to bring it in line with the main site

I'll ask them again tomorrow!

Great - the website is for them so we really do need their point of view.

nonya

[janey]

Could the teens have a chat room? Also I struggle with the 'search' facility so could that be made easier?

[Retro]

Sorry Janey, Chat rooms cause lot's of problems so we have decided not to have one. It is too difficult to monitor and moderate, especially where kids are involved we just couldn't possibly guarantee it's safety and so won't take the risk.

Which search facility do you mean? The forum one or the one on the main site?

Lindsey

[cazz]

The kids page at present refers to teens but there are a lot of younger kids so it could either be divided or not referred to as teen page as they feel like it isn't for them. A chat room for the kids would be great. I wonder whether a penpal coordinator could be set up to sort out penpals if any of the kids want it.

[Retro]

Thanks Cazz,

Yes, it has been suggested that the kids part of the site is split into a part for younger kids and one for teens.

By Chat do you mean a forum?

A penpal co-ordinator for youngsters sound's like a good idea, I'll pass this suggestion on to the relevant folks and see what we can do.

Lindsey

[ombili]

Ooh, I like the idea of having penpals for kids! Cool! Otherwise, I can't really think of much, but I just wanted to say that I really appreciate everything that's here now. I like the suggestions others have made, too.

Someday, those of us in the US should try to be more organized and come up with something similar that would link us to resources here in the US. I have yet to actually find a list of physicians who are aware of HMS here, and although I'm happy with my current situation, more or less, it would be nice. I'm just too busy/lazy to do anything about that at the moment. And I realize that HMSA is a British organization.

[nickb]

We did at one point co-ordinate pen pals for the children-however it was not popular,and with the neccesary levels of child protection now I don't know if this would be feasible, IE would the HMSA become liable for any problems arising from someone pretending to be a child?
I think we would probably also need someone to do a child protection course too

Sorry guys

Sue, not alot in the members area at the moment just literally a couple of past issues of the newsletters. We want it to become a real resource for the HMSA members so it encourages people to pay to join, thus keeping us going, but we aren't sure what to put in there

[Retro]

Hi,

It is an extremely difficult thing to work out. One of the main problems that I'm having at the moment is how do we guarantee that users that register ARE the age they say they are???

The registration process will be very different to how it is now and the entire forum will be invisible to anyone who is not registered (with the exception possibly of a faq type of thing).

At the moment there is no legislation in the UK to govern this type of thing and even the standard Coppa form is only really relevant/legal in the US. What we plan to do is have our own version of Coppa but it will be much more strict. There will also probably be an extra page that all users will see every time they log on with advice on internet safety.

All ideas are welcome at this point because all of the above are really just thoughts tumbling around my brain.

Lindsey

[Retro]

Just had another thought....we can disable the email and PM facility so that users can't contact each other off forum without it going thru a moderator

Lindsey

[JazzyJaz]

My mum would like an area for parents of adults and adolescents with HMS, if that's possible. She also said she'd like for me not to be able to see it, but then I'd rather I could say stuff that she couldn't see, so that part is tricky, but I agree an area for parents of adults/adolescents would be a good idea, as there is the part for parents of children.

[Retro]

Hi Jaz,

There is an area on this forum for Parent's of kids with HMS but it is visible to all users. The problem with you in particular would be that you are an adult so would keep using this forum as would your mum

The idea of revamping the kids/teen site is really to make it better for kids up to the age of 16/18.

Lindsey

[MandyJ72]

Hi

I see there's a kids section on the main site and Amy was having a look around at the weekend and she's desperate to chat to other people like her but it says the kids forum isn't operational at the moment and I promised her I would ask if there was any idea as to when it would be up and running?

She nagged me again this morning to make sure I asked!!

Ta
M
xx[/i][/i]

[Retro]

Hi Mandy,

Soon

Lindsey

[jakerleen]

Thanks Lyndsey, Dom asked me the same thing, I think he feels a bit lonely sometimes.

Jackie xxxx