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Fabrazyme Shortage

Jerry_at_NFDF
  • By Jerry_at_NFDF
  • Posted September 22, 2009 at 5:49 am · 6 replies
  • In Treatments
  • 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

6 replies

Jerry_at_NFDF

The 3rd Fabrazyme shortage Town Hall is:
Wednesday, September 30, 2009
6:00 – 7:00pm Eastern
(Call in beginning at 5:30pm Eastern)

Call-in information:
U.S. Toll free: 1-800-593-9988
U.S. Toll: 1-212-547-0203
Passcode: FABRY

You should send questions to The NFDF at:
Jerry.Walter@TheNFDF.org

You can also submit questions directly to Genzyme:
supplyupdate@genzyme.com

Jerry_at_NFDF

There is a third Fabrazyme Shortage Town Hall on Wednesday, September 30, 2009. See www.TheNFDF.org for details.

Jerry_at_NFDF

A third Town Hall teleconference about the Fabrazyme shortage was held on October 30th. Of the approximately 90 particpants, about 50 were individuals with Fabry disease and family members.

There was much discussion about how to use the allotted 2 normal doses over a 14 week period rather than a 4 week period.

Other main topics were the clinical impacts of the rationing plan and the schedule for returning to normal distribution.

There should be a 4th Town Hall in November. We'll keep you posted here and at www.TheNFDF.org.

At your service, Jerry

BizzerG

Thanks for the update ... we weren't able to make any of the town hall teleconferences due to scheduling conflicts, but we certainly like to be kept informed of progress.

LIZ

Jerry_at_NFDF

Thanks Liz. We'll have a date for the November townhall soon. Jerry

Jerry_at_NFDF

The next Genzyme Town Hall meeting is November 23rd at 6:00 PM (Eastern). See the NFDF website for details. The subject of this meeting is Fabrazyme and other drug manufacturing.

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