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The NF2 Crew is an online based support group for
Patients and Families with Neuofibromatosis Type II. We are one of the
largest NF2 based support groups in existance with over 300 members
spanning the globe. Our "meetings" are held via e-mail Mailing List (this especially
works well as many with NF2 are Deafened or Hard of Hearing). We also offer an online Message Board, plus we organize occasional "Crew gatherings" where members get together to meet in person
Every member is either directly related to someone with
NF2 or has NF2 themselves, though it can affect different people in
different ways, one of the expressions we often hear from new members
is "Wow, there is someone out there whose like me!" We share
information on doctors, hospitals and treatments; as well as Non
"tumor-talk" when you just need a break from NF2. Anything said is
considered confidential, if a Crew member just needs to vent, share
something of a personal nature or just ask a question, we want them to
feel this is a safe haven.
Guidelines
In order for the NF2 Crew to survive and provide a pleasant and
comfortable atmosphere for everyone, we've established some basic
guidelines for operation of the group. Anyone thinking of joining the
crew, should first review these guidelines.
Please read the guidelines. If you agree with then, click on the
link below to join. - Name: This independent group shall be named the NF2 Crew.
We are a self-governing body with no associations to any other group
or entity.
- Recipients: Membership is open to people with NF2, their
family members, and any original members not meeting either of these
criteria.
There is no limit to the number of members who may join.
- Use of the List: Posts are confidential and intended for
the group's members only. Do not copy to any non-member, or use or
disclose information about any member in a group posting without
that individual's express written consent. This does not apply to
medical articles or information on medical providers, treatment
information or concerns that are non-personal in nature or to shared
humor containing no member information. The names and/or email
addresses of the members shall be CONFIDENTIAL and not to be given
out for any reason without the express permission of EACH person
whose name and/or email address shall be shared.
- Non-flaming: All members are expected to be courteous and
appropriate when responding to or posting in reference to, other
members. This group is intended as both a source of camaraderie and
one of resources. Members can say pretty much anything they want as
long as it is said with consideration and basic courtesy.
Disagreement is to be expected and open discussion is encouraged,
with the provision that disagreements be addressed to issues and NOT
to individuals or their qualities. (Debate the issues, not the
person)
-
Bios: Each member is encouraged to submit a brief profile
(bio). <Back to top>
I agree to these
guidelines and want to join
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