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Fabrazyme shortage for Fabry disease

Jerry_at_NFDF
  • By Jerry_at_NFDF
  • Posted September 22, 2009 at 5:55 am · 2 replies
  • In Treatment
  • Shared with the public
  • Edited September 23, 2009 at 9:43 am
0 Recommendations

Tonight, there is a second Town Hall with Genzyme, the NFDF, FSIG, and the Fabry community about the shortage of Fabrazyme for treatment of Fabry disease.

To participate, please call in on Wednesday, September 23, 2009.
Time: 5:00 - 6:00 PM (EST)
US Toll Free: 1-800-593-9988
US Toll: 1-212-547-0203
Passcode: Fabry

You may provide questions in advance to Jerry at jerry.walter@TheNFDF.org or ask them at the Town Hall.

For more information, please call Jerry at 1-800-651-9131 or write to the email above. Thanks

Explore topics in this discussion:

Fabry disease Fabrazyme

2 replies

StephLynStill

So what's going on with the drug now? I've been watching a bit but haven't heard anything in awhile.

Thanks much for the updates and your posts. I really appreciate the information.

steph

Jerry_at_NFDF

Hi Steph,

Each person is able to receive the equivalent of two full doses of Fabrrazyme until the end of December. Normally we would receive about seven doses in this time. Physicians are working with people to decide on the best way to receive their doses such as two full infusions in 14 weeks or four half doses in 14 weeks, etc.

New drug is expected to be available in January.

Jerry

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