How many online support groups currently exist? Has anyone ever tried to 
do  a comprehensive listing or a directory or even to offer an estimate?
I'm especially interested in health-related online support groups, but 
would be grateful for any information on online support groups in general.

I'm thinking this would include groups that communicate via e-mail lists, 
web forums, web chat, IRC and newsgroups. Am I overlooking any other 
meaningful platforms? Are there any support groups that operate via IM?

If no one has yet done a directory or census of online support groups for 
health-related concerns, I'd be interested in trying to get one started. So it 
would be helpful to know of any significant attempts in this direction. I'd 
also welcome advice on the best way to go about it, and who the best 
collaborators might be.

Hello,

It doesn't look like anyone has tried to produce a comprehensive directory of 
online support groups or an estimate of their number, so you would provide a 
great service if you started a directory like that.

The number of  support group sites can be roughly estimated as nearly 1300 from 
the number of sites in Google Directory's Support Groups category (close to 500 
sites in the Health subcategory, and close to 800 in the rest of the 
subcategories):
http://directory.google.com/Top/Society/Support_Groups/ 
http://directory.google.com/Top/Health/Consumer_Support_Groups/ 

However, that number might not be very useful, because not all of those sites 
actually host online support groups, and many of them host more than one online 
support group.

There are many support group directories, but all of them list online support 
groups together with groups that don't have any online presence.

The most comprehensive ones are:

American Self-Help Group Clearing House (lists over 800 support groups)
http://www.selfhelpgroups.org/  
http://www.mentalhelp.net/selfhelp/

Patient UK Self-Help and Support Groups
http://www.patient.org.uk/selfhelp/ 
http://www.patient.org.uk/selfhelp/groups.htm#non-uk

US Government's Healthfinder: Support Groups
http://www.health.gov/nhic/NHICScripts/Hitlist.cfm?Keyword=Support%20Groups

Case Management Resource Guide (over 2000 health organizations including 
support groups)
http://www.cmrg.com/
http://www.cmrg.com/cmrg_cfmfiles/healtho.cfm 

To answer your question about instant messenger groups, try searching Google 
for:

instant messenger support group OR groups
://www.google.com/search?hl=en&q=instant+messenger+support+group+OR+groups 

The results include such sites as

ICQ's health support groups
http://web.icq.com/channels/lifestyles/health/
AIM Eating Disorders Discussion List
http://www.healthyplace.com/Communities/Eating_Disorders/Site/aim_eating_disorde
rs.htm 

and others.

As for people who are trying to do something similar, one relatively recent 
site I have been able to find is Emedguides.com (the Support Groups link is at 
the very bottom of their homepage):
http://www.emedguides.com 

Here's some information about them:

http://www.emedguides.com/topics.jsp?guide_id=48

"eMedguides.com is the online and in-print Internet directory for medical 
professionals. Our guides provide instant access to the top Web sites in 
medicine. 
Three things set eMedguides.com apart from other healthcare information 
providers: 
We do the analysis to choose only professional, content-rich sites. 
We categorize over 1,000 sites per specialty, so you can instantly focus on the 
information you need. 
Our guides are provided in book form to keep at your desk for ready reference. 
eMedguides are reliable sources of information in a medical specialty. Unlike 
most Internet search engines that return far too many random choices, we 
endeavor to act as the physician's private research arm. We provide continual 
updates to each guide through the site and annually in print."

You may find more relevant data in the Emarketer database:
http://www.emarketer.com

A search for "online support groups" yielded two results:

Online Groups US Internet Users Contact Most through the Internet, 2001 (as a % 
of internet users) 
PUB DATE:  06 Nov 2001 
SUBJECT:  Internet Users; Consumer Behavior 
GEOGRAPHY:  United States 

Top Sources of Online Health Information for Patients with Chronic Conditions 
in the US, 2000 
PUB DATE:  20 Feb 2001 
SUBJECT:  Medicine & Health 
GEOGRAPHY:  United States

Monthly subscription to the Emarketer database is $200.

There are extensive lists of internet marketing resources in the Google 
Directory:

http://directory.google.com/Top/Computers/Internet/Statistics_and_Demographics/
http://directory.google.com/Top/Business/Marketing/Internet_Marketing/ 

If you want to do more extensive market research, I would suggest purchasing a 
monthly subscription to several of those databases (it will be affordable if 
you split the cost with other freelancers; you can find them on freelance 
websites, see links below).

Regarding your search for collaborators, I would suggest contacting people who 
currently maintain online group directories of smaller scope (devoted to a 
specific health condition or a group of conditions),  and people in charge of 
health-related directories (some of those are kept up by individuals or small 
teams) listed at:
http://directory.google.com/Top/Health/Medicine/Directories/

You could also list your project at one of the collaborative development sites, 
such as SourceForge (http://www.sourceforge.org )


or other sites listed under

http://directory.google.com/Top/Computers/Open_Source/Hosting


Also, post on sites listed under:

http://directory.google.com/Top/Computers/Open_Source/Open_Content/ 
http://directory.google.com/Top/Computers/Open_Source/Open_Content/Idea_Banks/ 

and share your idea.

Try posting on Elance.com (http://www.elance.com ), too

or other freelance work websites, listed under 

http://directory.google.com/Top/Society/Work/Self-Employment/ 

, and look for partners there.

Best of luck in your undertaking!

Additional links:

US Department of Education: Online Support Groups: Nuts and Bolts
http://www.ed.gov/databases/ERIC_Digests/ed446330.html 

US Department of Health and Human Services: The Combined Health Information 
Database
http://chid.nih.gov/

US Department of Health and Human Services: The Healthfinder Search Engine
http://www.healthfinder.gov/ 

Useful Google searches:

"online support groups"
://www.google.com/search?hl=en&q=%22online+support+groups%22 

"support groups"
://www.google.com/search?hl=en&q=%22support+groups%22 

support group OR groups directory OR directories OR list OR lists

://www.google.com/search?
hl=en&q=support+group+OR+groups+directory+OR+directories+OR+list+OR+lists

Thanks, gale-ga. A very nice job.I do research in this field and know
many of the sites you mentioned, but you came up with several I hadn't
heard of. You helped my confirm my hunch that no one has attempted to
put together a truly comprehensive directory of health-related online
support groups. I'm trying to encourage some foundations to fund such
a project. For more information, see http://www.fergusonreport.com.

Hi there!

I have in my professional life had the opportunity to look for support groups for just about every kind of medical question, and have not run across a 
comprehensive list of any kind as the nature of support groups is they wane and wax with the member's involvement.

For instance The Cancer Society has many links to support groups online and off, or you can narrow down that to a specific kind of cancer and find many 
man that are not linked from the Cancer Societies web site in a general search, say at google.com.  

I searched here for "Online Support Groups Women's Health" and this is only one of a number undetermined of results:
http://communities.msn.ca/browse.msnw?catid=92

Many people dealing with medical problems start up a support group, and as the medical problem leaves their lives, the online group dissolves, therefore 
you run tino many links that are no longer active sites, etc.

Just as a starter, here is a website on a free host, http://www.geocities.com that is a directory of online medical information and support on the internet..

http://www.geocities.com/HotSprings/1505/guide.html

I do know that some groups use the bulletin board type of website, chat rooms, e-mail group lists, etc., and as stated above they are formed, and 
dissolve according the usage of members and the founders.  It would be a great task to constantly check the thousands of links and keep it updated as 
the nature of the Internet is here today, gone tomorrow.

Here is another way to look at it:
http://dmoz.org/Health/Consumer_Support_Groups/
This is a listing and number of Health related support groups online and offline.

Here is a an example: a web site for "OncoChat" and they use the IRC Internet Relay Chat for support groups.
http://www.oncochat.org/

I hope this helps.