Here are some of the sites on which I have found great information and support since my medical odyssey with Billy began...

 

 

The Vater Connection is a great place to meet other families with VATERS/VACTERLS Association.  The Bulletin Board provides support and information, and I have met many good friends there.

 

The Vacterl Network is another great place to meet other families with VATERS/VACTERLS Association.  This new site is a mixture of the old VACTERLS Association which put on the VACTERLS conferences so far, and the Denver area support group.  It's purpose is support and information for families, and to get the word out among medical professionals and hospitals.

 

This site is for families dealing with a child with a tethered spinal cord, either from a fatty filum or a lipomyelomeningocele (LMC).  This is a very active group with great information and emotional support.

 

Congenital Scoliosis Support - a group for families dealing with congenital (caused by malformed vertebrae) scoliosis.  There are many places to find information on "regular" scoliosis but with very few people dealing with congenital scoliosis, so a friend and I started this group, and it is now fairly large and active.

 

I haven't had much luck finding a support group discussing leg length discrepancies, so I started one of my own on Yahoo.  I would welcome anyone dealing with this issue.

 

The Caudal Regression group on Yahoo is a great source of info on caudal regression syndrome and sacral agenesis.  We have a wonderfully active support group, with twice weekly live chats on Yahoo Messenger.

 

The Pull-Thru Network is a site for families and individuals dealing with anorectal malformations and pull-through type surgeries.  There is a wealth of information related to these topics on the site, along with a link to an email support group with an active membership.  They have been invaluable to me over the past years.

 

VEPTR.com - is a great place to meet other families with scoliosis who either have undergone or are contemplating the VEPTR surgery.  This surgery uses expandable titanium rods to straighten scoliosis, increase room for lung growth and avoid early spinal fusion to allow for spine growth.  Check out the site for more info!

 

This website is helpful for looking up medical terminology and for a description of the different types of tests and procedures.

 

 

 

Carmell and Braydon's website - lots of good links and information about scoliosis and the Titanium Rib Project.