Dianne - info about posting

[Guest guest]

Hi Dianne - and I talked about this but I wanted to make

sure you knew too. I recommended to her that when it comes to

medical information, you link to websites like the oley.org or

kidswithtubes.org. If you actually write something yourself that is

medical in anyway, you run a personal liability issue.

With the RSS/SGA page at MAGIC, we have learned the hard way,

through the MAGIC attorneys and the medical advisory board -- we can

post things that are written by doctors or approved by doctors. But

I can be sued personally if I post something medically and it is

wrong. Hence why we do not yet have anything on g-tubes, etc. until

Harbison, Stanhope and Dumont approve the chapters written for the

Guidebook.

I also recommended to that instead she basically do the same

thing, but use personal stories to " tell the story. " For example,

use personal stories to talk about the common GI problems. Use a

personal story about a family's quest to find the perfect " button " .

This way, you communicate the information but without the personal

liability. Your site will be able to provide the information you

want, without opening yourself up to any personal liability.

Hope this helps.

> >

> > I am incredibly disappointed with the contents of this email.

> _________________________________________________________________

> I'm sorry you feel that way.

>

> __________________________________________________________________

>

> I have been a member here for over 4 years, over that time I have

> learnt everything I need to know about RSS, I have been supported,

>I

> have had opinions that have been accepted AND not accepted. I

have>

> agreed with opinions and disagreed. Never once have I felt I

couldnt

> have an opinion or say how I felt. MOST importantly I have never

> forgotten the reason I am here on this site is because of my son

who

> has Silver Syndrome.

>

____________________________________________________________________

> No one is suggesting otherwise.

> ___________________________________________________________________

>

> > If we as parents fragment everytime one of us doesnt agree with

the

> > other, I believe there will soon be many RRS support groups. I

wish

> > this new group well and hope that it is achieves what it sets

out to.

> ___________________________________________________________________

> That's not why this site was put up. Actually, it was my

suggestion

> in February. I have the capabilities to design and institute a

site,

> the server space, and just thought it was a natural evolution that

> would provide knowledge that is currently not available. For

> instance, pictures of tubes and why one is used over another. The

> site is in its infancy. Hopefully we can continue to grow over

time

> and be helpful.

>

>

_____________________________________________________________________

>

> > My disappointment is the suggestion that support specifically

> > relating to RSS is not found here. That is exactly what is found

> > here. Perhaps support of other issues in an RSS parent/relatives

> > life is not.

>

____________________________________________________________________

> That is, of course, one of the reasons for the new forum. There

is a

> place there to discuss non-RSS issues. It's easy to avoid if you

> don't want to become involved.

>

> Yahoo Groups is not user friendly. You can't ignore things

readily.

> You can't readily pick and choose what you want to read. You can't

> quickly and readily catch up on posts you are following. If you

read

> it in email it can be a horrendous task.

>

> I also understand the concern about fracturing. But I think the two

> groups can ride the waves side-by-side. There's something in it

for

> everyone. And they are two different mediums, allowing different

> things to happen in different ways.

> _________________________________________________________________

>

> > I see this site(RSS yahoo) as an international community of RSS

> > children and their families. I hope it continues to give

information

> > and support, in an enviroment willing to listen to anyones views.

> ___________________________________________________________________

>

> I certainly hope that it does carry on for many years into the

future.

> For as long as RSS continues to baffle parents and science.

>

> Dianne - Grandmother to Ian

>