mommy2diego
New member
I was wondering if any of you have organized a support group or advisory board for your cf clinic? I have been talking to our social worker lately about getting a group together and she wrote 2 sentences in a newsletter asking if anyone was interested and didn't get too much response.
I think with proper advertisement it would get a better response.
Another mom and I want to start one... maybe to meet once a month( parents of children/teens with cf.... no kids would come of course). thought we could meet for support, and maybe come up with some ideas to improve clinic...We also thought it would be neat to put together a voluntary directory where people could leave email addresses, or what social networks they belong to. This forum is great, but sometimes it would be nice to talk to some people that deal with the same docs etc.
Just wondering if anyone has done this, and if so how has it been?
I think with proper advertisement it would get a better response.
Another mom and I want to start one... maybe to meet once a month( parents of children/teens with cf.... no kids would come of course). thought we could meet for support, and maybe come up with some ideas to improve clinic...We also thought it would be neat to put together a voluntary directory where people could leave email addresses, or what social networks they belong to. This forum is great, but sometimes it would be nice to talk to some people that deal with the same docs etc.
Just wondering if anyone has done this, and if so how has it been?