About the Chordoma Support Group
This is an independent, international, online, support group for all those affected by Chordoma to offer each other friendship, support and information. We welcome patients, caregivers, family and friends. Although, not surprisingly, the disease and its treatment tend to be our main topics, we have also celebrated babies and weddings, sympathised with hurricane victims and laughed together.
Server space for this site has been provided by Sympatico/MSN. Thanks - we appreciate it!
The present volunteer Managers are Ann, Norma and Bill. Contact us at this email 
There are more than 500 registered members as of May 2007. 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 a rare disease occurring once in every 1 000 000 people. There is no charge for the use of this site. Managers volunteer their time, as do members of the group who help and assist them. We do not fundraise or accept donations.
Our group also includes a few 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, as there are very few of the Proton machines used to treat Chordoma. Most of the information available may be viewed by visitors. You will need to join - register - to post messages. We screen new members to avoid spam or address collectors.
If you are joining us, please - introduce yourself. We are sorry that you need the help and information available here but we are very happy to meet you. There is a link here New Members, which has some ideas to help you get the most out of the Group.
Information about our Confidentiality policies can be found here.
For more information about Chordoma, please visit our Links page, in the list to the left of the screen.
Talk to us by posting a message, or by using an email address from a profile (available by clicking on a name).
Welcome! on behalf of the Group.
Updated April 2008
England