Vascular Birthmarks Foundation Forum - View Single Post - Sirolimus (Rapamune)
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Old 08-31-2012, 11:24 AM
dancermom dancermom is offline
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Join Date: Jun 2012
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Hello, havefaith. I have a couple of articles I can send you about Rapamycin. Also, I know one or two people who are taking it at AVMSurvivors.org If you join AVMSurvivors, I can put you in touch with them.

I highly recommend the site -- there are over 500 members there with Extremity AVMs, and information sharing can be very helpful. It made all the difference in my son's case; he is now AVM free.

Do you mind if I ask which doctor is recommending Rapamycin? I like to keep tabs on which AVM docs are trying different drugs.
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