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Temporary Shortage of Fabrazyme
Genzyme Press release from June 16 (June 19  2009)
Genzyme US Supply Update Fact Sheet (June 19  2009)

You may already be aware of the current situation that if no changes are made in current Fabrazyme product usage, there will be a temporary shortage of Fabrazyme in September 2009 due to an interruption in production at Genzyme's manufacturing facility in the USA.

A representative of the CFA and others from Fabry patient organizations in North America were invited to a meeting to discuss this issue on Monday June 22.

A representative of the Fabry International Network has been invited to participate in the Fabry Stakeholder Working Group (EU) which held its first meeting on Thursday June 25, 2009.

Please refer to Genzyme website for the latest information and updates at
http://www.genzyme.com/supplyupdate/


Information published includes:

"In some instances, recommendations will come directly from the regulatory authority, such as the EMEA in the European Union, in which case Genzyme will support the dissemination of these recommendations to physicians and patient organizations.

In other instances, where appropriate, a multi-stakeholder group comprised of physicians and patient group leaders may develop their own ecommendations. The Fabry community should expect to begin seeing specific recommendations in the next few days as they are published.

In areas where a regional recommendation has not specifically been created, physicians may choose to review all available recommendations to plan the appropriate treatment with each individual patient during this temporary supply constraint."

If you have any questions please contact your local Fabry physician, the CFA or your local representative at Genzyme Canada.

Regards,
Ed Koning
President, Canadian Fabry Association
Secretary, Fabry International Network
 
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