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Support Groups
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Computer/Internet Support Groups
Support Groups by State
CYSTIC-L
CYSTIC-L is an email support-group for people with Cystic Fibrosis and
their friends, families, and health-care providers. It includes both casual
banter about the varied impact that CF has on our lives, as well as technical
and medical information exchanges that help us to overcome the more unpleasant
factors that this silly little gene imposes upon us. An extensive FAQ is
available free to subscribers (contains much CF information, and references
to other CF resources). There are over 500 list subscribers. Current traffic
levels are running around 20-50 messages per day; a digest option is available
which compiles messages and distributes them once every 24 hours.
If you have neverparticipated on a mailing list before. Please
check out this
Important resource for Mailing lists. It offers information on basic
operations of the lists as well as ways to avoid the flame. Ok now you
know all there is to know about Mailing lists.Here's how you access CYSTIC-L:
You need to send an E-mail toLISTSERV@HOME.EASE.LSOFT.COM
The subject line is ignored, so in the body of the e-mail type:
SUBSCRIBE CYSTIC-L your-first-name your-last-name<
[So it would look like this if I were subscribing: SUBSCRIBE
CYSTIC-L Sandra Angell]
This works in reverse as well to unsubscribe (but your name
is not needed), put this in the body of the e-mail:
UNSUBSCRIBE CYSTIC-L
If you have problems subscribing, Ron Trueworthy (CYSTIC-L
housekeeper) will be glad to help; just email
TWINOAKS@EROLS.COM
AOL America On-Line:
For those of you who are computer literate, a small support group has
formed on-line. There are weekly Thursday night chats at 9pm (EST) in the
"CF Chatter" room. The group consists of moms, dads and CF adults.
ICQ Chat
The CYSTIC FIBROSIS ICQ CHAT GROUP has chosen ICQ as the preferred method
of communication between its members. ICQ empowers members with a means
to chat whenever they like and enables them to share ideas, discuss similar
interests or anything else. We encourage all members to get ICQ and provide
us with their ICQ numbers. To check out their web page and access their
group ckick here
Connecticut College or Concoll List
Concoll List- cysticfibrosis is an email support-group for people with
Cystic Fibrosis (CF) and their friends, families, and health-care providers.
It includes both casual banter about the varied impact that CF has on our
lives, as well as technical and medical information exchanges. We have
over three hundred members, are active, have NO OWNER, and no limits on
the number of posts. We have been established for a year. With an academic
server no one person controls our list, and the members set the policy.
To subscribe to our list the request should be sent to: Majordomo@conncoll.edu
Command: subscribe cysticfibrosis Your
e-mail address
Our address is: cysticfibrosis@conncoll.edu
If you ever need to get in contact with the owner of the list, (if
you have trouble unsubscribing, or have questions about the list itself)
send email to owner-cysticfibrosis@oak.conncoll.edu
. This is the general rule for most mailing lists when you need
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