all

Since I have seen multiple messages on/from all three RF/RPF support groups, I wrote the following in response to the latest note. Maybe it will help others in the same quandry and won't get the higher-ups at Careplace too mad at me. I'll post this on the other two boards too.

as far as support groups for retroperitoneal fibrosis (RF or RPF) are concerned, there should be absolutely no relation between the "Google group" & Careplace.

The Google group is at http://www.retroperitonealfibrosis.com/ and lists 39 members. It was started by Deb B and her husband for support that they thought wasn't available from the Yahoo RF group (http://health.groups.yahoo.com/group/Retroperitoneal_Fibrosis/) which has well over 400 members and very extensive files, information, links, etc and is a very active group with multiple daily postings.

Careplace is at http://www.careplace.com and this forum is the RF section. The owner/founder of the Yahoo RF group, David Hughes, has joined Careplace apparently as an employee and has tried (and continues to try) to solicit members of (and visitors to) the Yahoo group to instead join the RF section of Careplace.

As mentioned above, the Yahoo group (http://health.groups.yahoo.com/group/Retroperitoneal_Fibrosis/) was founded by David Hughes close to ten years ago. (He founded a whole slew of support groups on Yahoo for rare diseases, RF being just one. He has children that have a rare disease and so had a personal interest in a support group for them/that disease. He saw a need for other support groups and thankfully filled that need.

Membership in any of these groups is easy. All that you have to do is sign in. Trying to join the Yahoo group may be a bit harder since the opening page touts the Careplace group and it appears as though joining Careplace is the way to join the yahoo group.

A major difference in the groups structure is what you saw regarding postings. Another is that membership lists, emailing, reference materials, links to other support information, etc appears to be most open (and easily accessible) on the yahoo group and hardest to access on Careplace, with the Google group in the middle.

Messages from each of the groups can be identified by their subject line as follows:

The Yahoo group starts with [Retroperitoneal_Fibrosis].

Careplace messages start with [rpf] or Re [rpf].

and it's been so long since I received a message fro the Google group that I don't remember its subject line. (yes I belong to all three, but rarely respond to other than Yahoo since that's the active one.)

If I'm not mistaken, if you want to stop getting messages or un-join any of the groups, that is done on whatever page in the group site your personal information is stored on. (In all groups personal information is just that, personal, and accessible only to you. Some groups have a page displaying whatever it is that you want displayed, but the groups make it quite obvious that the info will be open to all members. There is a file explaining how to unsubscribe from Careplace. There is also a file explaining how to join Careplace. Both are at http://health.groups.yahoo.com/group/Retroperitoneal_Fibrosis/files/ with the titles to join... or to unsubscribe... but you would need to join the Yahoo group to access those files.

Hope that this helps and isn't too longwinded.

Put