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Group Description

This group is to address the special needs/concerns of people who have, care for, or know someone who has Chiari Malformation(ACM), Tethered Spinal Cord(TSC of the Filum Terminale family including Occult Tight Filum Terminale), and/or, Ehlers Danlos Syndrome(EDS)(and other related connective tissue disorders) in an environment that encourages open discussion and understanding. This site is under continual construction. I will be adding links to publications, educational sites, and support groups as I can. I encourage sharing information (including local medical support for your area) as you have it. If you find links or studies you think might be helpful to the group let me know and I will post them in the Links or Files sections.


We also have a group specifically for the spouses/ significant others of trifecta patients. It is specifically to support our support at home and allow them a personal place to ask questions and vent frustrations. Much of the information on this group will be duplicated there for those spouses who want to learn about what we have. The group is "You have what?!?!" the address is:


http://health.groups.yahoo.com/group/youhavewhat/


We started in 2005 are growing quickly. Please spread the word about this site to others in our community. Separately these diseases are hard to understand and treat. With these diseases combined our only hope is to help each other understand, learn, and discover. We are literally the pilgrims of the trifecta.


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  • This is a restricted group.
  • Attachments are permitted.
  • Members cannot hide email address.
  • Listed in Yahoo Groups directory.
  • Membership requires approval.
  • Messages require approval.
  • All members can post messages.

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