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NF2 Support

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. 

  1. 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.
     
  2. 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. 

  3. 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.
     
  4. 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)  
  5. Bios: Each member is encouraged to submit a brief profile (bio).

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I agree to these guidelines and want to join

 
2006 NF2Crew
Some content used with permission.