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.What's New? Welcome to the Chordoma Support Group! New members - we are sorry that you need us but glad to welcome you.
 Please, please, please introduce yourself. A major part of groups like this is the chance to meet others in the same position. Until I went to Boston, I had never met anyone except doctors, who even knew what a chordoma was. Consider using a title that includes your geographical location e.g. New member - South Africa . We do not recommend that you include your email or phone number in a message. You can go to Settings and show an email address in your profile that is only available to members. More This is a public view, private membership site. The managers thought about it and decided that, when you get a diagnosis like this, you need information right NOW. Please be aware that anything that you post on the Message Boards can be seen by the public and could be picked up by search engines. If you do not want to show your email address in your profile, that's fine. If you want to contact someone but do not have their address, we can probably forward a message from you to that person - we don't guarantee a reply. Questions, comments, concerns - ask a Manager (Ann, Bill or Norma) The server/site doesn't always run perfectly but it is free - thanks, MSN - as is the tech support. Our 2008 budget is $00.00. We do not fundraise. Group Pins We have pins to identify us to each other at Proton Beam clinics. More There is a lot of information in the menu items to the left of this message - have a look. All contributions gratefully received - we are looking for sites in other languages right now. Once in a while, someone gets an incorrect diagnosis of chordoma. If it happens to you, you don't have to leave, but we'd like to know, in case someone else is in a similar position and needs to share. - There is a group of members with chondrosarcoma of the skull base which is often misdiagnosed, but eventually treated in the same way, as chordoma.
- There are also people with more than one sort of brain tumour.
A fair amount of communication is done by personal email here. Don't be afraid to click on a name and introduce yourself if you have something to discuss. I've found wonderful support here and appreciate it very much. We're all in this together, right? Ann
Manager Updated August 2008
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