CTX resources

Advocacy organizations

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.

Real people with CTX

Mystery Diagnosis. A video patient case of CTX featured on a television series "Mystery Diagnosis."
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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