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Chordoma Support Group - for New Members
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.
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 you can email them by clicking on a name. Information about our Confidentiality policies can be found here.
Questions, comments, concerns - ask a Manager (Ann, or Bill). The server/site doesn't always run perfectly but it is free - thanks, Yahoo! - as is the tech support. Our 2010 budget is $00.00. We do not fundraise, solicit or accept donations.This group is not funded by any other organisation.
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 are a few 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
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Frequently Asked Questions about the Chordoma Support Group
What sort of Group is this?
This is an international, online, support group for all those affected by Chordoma to offer each other friendship, support and information. It is run on cooperative lines, by members, for members. When the site was threatened with closure in 2003 due to the death of the founder, a group of us, mainly people who had met in Boston, decided to keep it going. The Group used to be on an MSN server. When that service closed, we relocated to Yahoo! It's not perfect, but it is free - thanks, Yahoo!
Who started this Group?
The original administrator was Dr. Jeffrey Williams, a board certified Neurosurgeon and Radiation Oncologist at Johns Hopkins Hospital who died suddenly, back in May of 2002. We are very grateful to him.
Who is running the Group now?
There are presently two volunteer Managers, who work together to keep things running smoothly. Each is a patient or caregiver. One in Canada and one is in the United States.
Who can join this Group?
Anyone who has been affected by Chordoma is welcome. Our group also includes people with other types of skull base tumours. We come from all over the world.
How do I join the Group?
Click on Join Now on the left of the Home page of the message board,
http://ca.groups.yahoo.com/group/Chordoma_Support_Group/
You will need to explain briefly your reason for joining when you apply, and supply an active email address where we can contact you. If we cannot contact you, we cannot process your application. You can also use the managers' email to ask for an invitaion to the group. Don't forget to include the reason for joining.
Use this Managers' email chordomamanagers@gmail.com
How do I get in touch with other members of the Group?
Post a message, reply to a message on the Board, or use an email address from a profile (available by clicking on a name).
How do I contact the Managers?
Use this Managers' email chordomamanagers@gmail.com or post a message on the Board.
Can I get medical advice here?
No. This is a peer to peer group, who focus on day to day management of our disease and treatments. There are links posted to relevant on-line information, by qualified people and from reputable sources, but these cannot substitute for your doctor's advice.
Are there any rules that I should be aware of?
When you join a Yahoo! Group you agree to the Terms of Use . Click here to read them. We discourage public discussion of other people by name and we stay on topic. Information about our Confidentiality policies can be found here.
We're all in this together, right?
Ann
ManagerReviewed June 17 2010
