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andrew
09-23-2014, 08:01 PM
One of our members brought up an idea that had been suggested to me some years ago and I'd elected not to proceed with. This idea was to expand the forums to cover other AI diseases as well such as Graves, MPA, Lupus, MS etc. I'm almost positive some of our number have scored the jackpot and have WG and Lupus for example.

Effort-wise it's not a huge deal - just a matter of creating a few new forums. Might also need to change the name of the site perhaps too. Would still be accessed via the same domain name (wegeners-granulomatosis.com) and probably by other names as well. Just might change the name at the top. I dunno - thinking out loud.

Thoughts/comments/suggestions welcome. I'm kinda partial to the idea. If done right would expand this community quite a bit.

mishb
09-23-2014, 08:45 PM
Where would it stop at Andrew?

Would you make it everything Vasculitis or everything Auto Immune........that's huge :confused1:

I have WG, Lupus and MCTD and I am on other sites that are just for Lupus or just for MCTD - I kind of like it just WG but think it could be expanded to everything Vasculitis
......that's me just thinking out loud too :unsure:

rif
09-23-2014, 09:01 PM
Hi Andrew

I agree with mishb it would include an enormous amount of AI related topics, specific information for each problem could get lost amongst the postings. Some people I know do like being on individual sites because of the ease of using them. Another one just thinking out loud too:unsure:

Rif

annekat
09-24-2014, 01:21 AM
I tend to agree with Mish and the other two above, although I'm just waking up and starting to think out loud. Our condition is less well known than say, lupus, and people recently dx'd with WG are more in the dark and possibly freaked out by having something so rare and scary sounding. Finding a site especially for WG, with so many great people on it, was very comforting for me when I first came here. If it had been for vasculitis in general or autoimmune diseases, it would have seemed less personal and more like being lost in the shuffle. There's a vasculitis group on Facebook where we can learn about other forms and meet those folks. We are already supportive of people with other conditions than WG who happen to come our way. So I'm leaning toward keeping this one as it is, but am open to changes if enough people agree to them.

Dirty Don
09-24-2014, 02:21 AM
Don't do it...density obscures the problems and answers we seek...got enough problems at the grocery store as it is!

Pete
09-24-2014, 02:32 AM
I think expanding the scope of this forum would esssentially duplicate the Vasculitis Foundation's Facebook page. Wegs has so many nuances and quirks that I think would be lost in the clutter of all the other forms of Vasculitis and AI diseases. Put me down as recommending against expansion.

Wegetarian
09-24-2014, 03:33 AM
First I figured it would be a good idea to include say all vasculites... But then I thought about the Vasculitis FB-page which is really cluttered as you never know what vasculite they have, and hence their advice might not be relevant at all. So I would vote no.

I think MPA could well be included here though, since its quite similar to Wegs.

Geoff
09-24-2014, 04:39 AM
Hi Andrew, whilst its great to keep the Forum "fresh" and innovative, I have to agree with the others who have posted and say I would be against this particular idea.

You have only to scan a small sample of the posts to witness the diversity of this illness, and I sometimes wonder if I have the same disease as others who post! Imagine how crazy it would be when you sign on and scan the new posts if we expanded the Forum? I think I would glaze over and lose interest and attachment, after all we are a special bunch of souls!

jvilner
09-24-2014, 05:12 AM
I am in agreement with everyone. Well put!! Don't do it Andrew.

gilders
09-24-2014, 08:40 AM
I think the forum is great as is. I sometimes don't get round to coming on the forum for a while and it takes a few days to catch up with everything and everyone. Expanding it would make it less personal. I feel like we're quite a close knit community here and wouldn't want that to change.
Well done on asking for our opinions though and not steaming ahead with it.

Debbie C
09-25-2014, 10:11 PM
I have to agree with everyone also,my answer would be no. Like Geoff put it we are a special bunch !!!

renidrag
09-27-2014, 09:43 PM
Special people, Special disease, Special Forum with a Special Administrator
Dale

rif
09-27-2014, 11:08 PM
Agree with that Renidrag

Rif

vdub
09-28-2014, 02:16 AM
I think you have your answer, sir.... :-)

Michael Bell
09-28-2014, 04:31 AM
I have to agree with the majority on this Andrew. This site is very important to WG sufferers, we need it, and we need each other. It is a very nice idea to expand the site but we would be swamped with to much information that is not suitable for our wee group.
Mike

mrtmeo
09-28-2014, 10:40 AM
Hi Andrew,
I was the one who asked about adding MPA because it is very similar to wegener's, but I agree with others on adding the other AI diseases.
Adding the others opens a big can of worms due to the immense differences.
However, MPA is extremely similar and treated with the same meds as GPA.
It would only need a link in the forums listed as an MPA section and not the whole forum.

vdub
09-28-2014, 12:17 PM
I think we should just keep life simple. The forum is working so well for us now and has been a great answer for many of us for years. I think we should leave it alone. I hate to mess with something that's working....

09-29-2014, 08:43 PM
I think this is the best forum worldwide on Wegs/GPA. :thumbsup:
Very, very usefull for us, with our funny rare disease.
I hope it stays the way it is...

MikeG-2012
10-09-2014, 12:55 AM
My opinion is that if the home page reflected links to DIFFERENT forums for different diseases, that could be cool. For example, if someone typed www.autoimmunediseaseforum.com (http://www.autoimmunediseaseforum.com), that would open up the landing/main home page giving folks the links to the forum that is for their disease. (btw Andrew, that url looks like it is available)

This forum would remain unchanged, just new ones, for other auto-immune diseases, would be added to Andrew's servers.

I don't believe that mixing in other diseases into this forum would be a good idea.

The good thing that COULD result from this is to have all auto-immune disease sufferers on one site, and just MAYBE that would draw some attention to researchers, advocacy groups, etc.

annekat
10-09-2014, 01:38 AM
Good ideas and point of view, Mike. I know we have had some people with MPA and other things similar to WG on here, and that is fine, we aren't going to turn them away, and they have something to contribute. I wouldn't want to encourage it too much, though, as it could be confusing for those new at Wegs and make the threads harder to follow. I think having links or sub-forums for other kinds of vasculitis or AI diseases is a good idea, though. Especially if the people with those diseases have nothing as good as our forum to go to.

vdub
10-09-2014, 04:17 AM
....if the home page reflected links to DIFFERENT forums for different diseases, that could be cool.

I don't think anyone would care if you went ahead and did that, Mike. Normally, if you register a domain, the registrar will allow you to forward the URL to an active domain.

For instance, several years ago when they renamed wegners as GPA, I registered the name wegeners-gpa just in case we ever wanted to use it. Last year, I transfered the domain to Andrew and it remains parked and unused. However, the domain does redirect to this domain. Click here --> http://www.wegeners-gpa.com and you'll be redirected to this forum.

As long as any redirected URLs were tasteful and previously approved by Andrew, you could buy and redirect as many as you wanted. However, before you start doing that, even parked domains have cost associated with them (about$15/yr) and the tactic probably wouldn't reap the results you're looking for. How a site is ranked on a search is a little more complex than that. There are entire businesses devoted to search ranking for web sites.

MikeG-2012
10-09-2014, 04:43 AM
I don't think anyone would care if you went ahead and did that, Mike. Normally, if you register a domain, the registrar will allow you to forward the URL to an active domain.

For instance, several years ago when they renamed wegners as GPA, I registered the name wegeners-gpa just in case we ever wanted to use it. Last year, I transfered the domain to Andrew and it remains parked and unused. However, the domain does redirect to this domain. Click here --> http://www.wegeners-gpa.com and you'll be redirected to this forum.

As long as any redirected URLs were tasteful and previously approved by Andrew, you could buy and redirect as many as you wanted. However, before you start doing that, even parked domains have cost associated with them (about$15/yr) and the tactic probably wouldn't reap the results you're looking for. How a site is ranked on a search is a little more complex than that. There are entire businesses devoted to search ranking for web sites.

Just to clarify, I'm not the one looking into this, Andrew was the one thinking out loud in the original post. I'm well familiar with websites and domains Vdub (I have a dual degree in Graphic Design and Web Design). (-8

Hammy8241
10-09-2014, 04:56 AM
I think that by staying a single disease site, everything is consolidated under a single site. If more are added, then information which may be important could be discussed on a different thread and missed ( not explained that well but hope you can understand what i mean)
Also there are Vasculitis sites readily available so why be just one of a few when you can be No.1 for WG?

annekat
10-09-2014, 05:18 AM
Maybe we should look and see if there are already some good forums for the other kinds of vasculitis, and refer people to them if there are. As for the more well known AI diseases such as lupus or RA, there must be some good forums, I'd think. And although Facebook groups are cool, and there is a place for them, it is clear to me that the forum format is much preferable in general, with all of its various functions.

MikeG-2012
10-09-2014, 07:43 AM
I think some of you are misunderstanding. I was proposing the idea to Andrew that This site would be completely the same.

a new forum could be built for other AI diseases, each of them operating independently, just like this one. They would be on a completely different forum than this one, but for their specific disease.

vdub
10-09-2014, 08:31 AM
Sounds like you are proposing an AI ring.....

annekat
10-09-2014, 01:40 PM
I was just wondering if maybe some of these other forums already exist. I think having a separate forum(s) for directing people to the info they need is a good one, if someone wants to go to the work of creating it. For the more rare AI diseases, there may not be good forums to fulfill this need. But I'm still among those who would like to see this forum stay the same, which seems to be the consensus. Occasionally we get a member who doesn't turn out to have WG or who has something similar. I don't have a problem with that, as it doesn't happen much and they usually turn out to have something to contribute. But I am for officially keeping this forum the WG/GPA forum.