CTX resources

National Organization for Rare Disorders (NORD) CTX: NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

National Institutes of Health – Genetic and Rare Diseases Information Center CTX: Find additional information on CTX on this page, hosted by the US Department of Health and Human Services

United Leukodystrophy Foundation. Leukodystrophies are diseases that affect the white matter of the brain. CTX is sometimes characterized as a leukodystrophy. The United Leukodystrophy Foundation maintains a CTX page and has a discussion forum where people with CTX and their families can connect and offer support.

Mystery Diagnosis – video patient cases. Two cases of CTX have been featured on the television series “Mystery Diagnosis.”
https://www.youtube.com/watch?v=AGbs8zzlddU
https://www.youtube.com/watch?v=amDVKi3X7TY

Note that Retrophin, Inc. cites the above-named external resources for information purposes only, and does not endorse or guarantee in any way the services or advice provided by them.

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