If you are a patient with Wolfram syndrome and have been prescribed a medicine for an "off-label" use, I would appreciate if you contact us (Phone: 314-362-8683, urano@dom.wustl.edu).
http://wolframsyndrome.dom.wustl.edu/
As I mentioned in my previous blogs, the law let physicians prescribe a FDA-approved drug to treat a condition for which it is not approved. This is called an "off-label" use. Many physicians are compassionate, and try to help their Wolfram patients by prescribing a drug for an "off-label" use. I often get questions from physicians and patients related to an "off-label" use. Although I don't recommend any specific FDA-approved drugs at the moment, I would gladly answer your questions. If you are receiving a drug for an off-label use, we can monitor biomarker levels for you and your physician. I respect your and your physician's decision. So please contact us. I just want to help.
