Ctxinfo.com
Title
CTXInfo Home - Information about Cerebrotendinous Xanthomatosis
Description
Welcome to CTXInfo.com. This site was created to organize information about the genetic disorder Cerebrotendinous Xanthomatosis(CTX) an autosomal recessive inherited form of Leukodystrophy and to bring those affected together in hopes that an organized presence would be useful in getting the disease more mainstream. We started this site after our daughter was diagnosed with CTX and discovered that there is very little organized information on the internet about this disease. Our goal is to bring together those who are affected to share stories about the disease, treatments that they might be trying and the successes you have had in dealing with this disease. Since CTX is in the family of genetic disorders called leukodystrophies, CTXInfo.com will contain some information about the disorders that are in the leukodystrophy classification.
Those of you who are taking medication or obtaining it for someone else know that getting it is not as simple as making a trip to the drugstore. We would like to see this change and feel that an organized effort by those with a vested interest in making the medication available might be successful in making this essential treatment easier to obtain for those in need of it.
We have implemented a message board which you can get to by navigating to the forums link in the left navigation area or clicking the Forums button near the top of the page. I strongly encourage you to post your stories and experiences. The more traffic we get the more people we will find that are affected and the more interest we can generate in our cause. You are encouraged to share contact information with others on the board and post things that others might find helpful in dealing with CTX and other leukodystrophies.
