We are an online community using a message board and email to communicate with each other around the world. We use a message board provided by Yahoo! - thanks Yahoo!
This is a peer group, for patients, family and friends, to offer support, friendship and understanding and shared experience. There are links posted to relevant on-line information, by qualified people and from reputable sources, but these cannot substitute for professional, medical advice. The information posted on the message board and information pages is designed to complement, not replace, the relationship between a patient and his or her own physician.The minimum age to become a member of the Chordoma Support Group is 15 years old.
We occasionally permit researchers to offer members the opportunity to contribute to research surveys or telephone focus groups. This is a voluntary activity and members remain anonymous. Certain surveys are done to collect useful information such as doctors familiar with chordoma and chemotherapy in trials or used off label for chordoma.
The owner of the website is A.C Wood, Ontario, Canada. The present volunteer Managers are Ann, and Norma, members of the community. The site is provided by Yahoo! Some advertisements are placed by Yahoo. The website itself does not accept advertisements. Because of the ads, the message board is provided to us without charge. This site is moderated daily. Site users and managers are expected to behave at all times with respect and honesty. Anyone who posts inappropriate material, will be warned and the posting will be removed. Anyone persisting in posting inappropriate material may be banned.
There are more than 190 registered members as of June 2010. Some are patients, some are relatives and friends of patients. Members share information and resources for the treatment of Chordoma tumours. This sharing through the Internet is particularly useful, as chordoma is such a rare disease occurring once in every 1 000 000+ people. Our group also includes people with other types of skullbase tumours.
This Group was set up in 2001. The original administrator was Dr. Jeffrey Williams, a board certified Neurosurgeon and Radiation Oncologist at Johns Hopkins Hospital. He died suddenly of a heart attack while exercising, back in May of 2002. The group was threatened with closure in 2003 due to Dr. Williams' passing. At that time a group of us, mainly people who had met in Boston, decided to keep it going. We are very grateful to Dr. Williams.We come from all over the world. Sometimes we meet in person, at treatment or at conferences. If you are joining us, please - introduce yourself. We are sorry that you need the help and information available here but we are very glad to meet you.
Please also read the information for new members and the FAQ here .
Join the Chordoma Support Group: Email us for an invitation
Confidentiality Policy on the Chordoma Support Group Site
This is a public view, private membership, international site. All documentation and the Message Board are open to view on the Internet. The message board is on a server provided by Yahoo! at no charge to us. It is subject to the Yahoo! Privacy Statement at http://info.yahoo.com/privacy/ca/yahoo/
The information pages are on the website of a church in Canada.
This is a peer to peer group for patients and family or friends of patients,who focus on day to day management of the disease and treatments. There are links posted to relevant on-line information, by qualified people and from reputable sources, but these cannot substitute for professional, medical advice.
The information on this website represents the personal experiences that the person or a close family member has undergoe, such as symptoms, tests, treatments. Postings may be deleted, but not modified, by the managers or the writer. If you offer any third party information, such as an article, you must link to that article. When another organisation has information posted relevant to chordoma and/or to this group, a link may be posted to that information. There is an expectation that anything you post on the board is true and correct in light of your knowledge.
There is a membership application process, designed to review new applications in order to keep the site free of inappropriate postings.At the time of application, a member's email address will be forwarded to Managers. The email address will be kept on file but will not be disclosed to anyone else. Applicants will be asked to provide a reason for the application. This information will not be shared with anyone except the Managers. Each member of this site has a profile page, viewable by registered members of the site. Members may choose which information to show on that page. There is also a documents folder accessible by members only.
This site sets a cookie for an automatic sign-in if that option is chosen by the member. You may reset sign-in options by signing out and in again at the head of the page. There are advertisements placed on some pages by the server provider, Yahoo! Groups, but the site itself does not accept advertising.
This group is run by volunteers who pick up some costs. The Group does not solicit nor accept donations, does not fundraise and operates independently. Yahoo posts some advertisements [which is why we do not have to pay for the message board], but there is no advertising permitted on the message board.
If there are any questions about this page, please contact the Managers.
Updated June 22 2010
Our sincerest thanks to St Aidan's Anglican Church in Canada, who have lent us the web space for this page.