Discussion of benefit and cost of therapies for rare disorders in Switzerland

Was darf ein Jahr Leben kosten? Pompe in the Press (NZZ Online, Switzerland): (in German) “Die obligatorische Krankenversicherung...
Author: Press
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December 22, 2010

Pompe sufferer has bid rejected

Pompe in the Press (Sunshine Coast Daily, Australia): “Pompe Disease sufferers like Brad Gibson, of Buderim, want the...
Author: Press
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December 21, 2010

Sick dad’s hopes crushed as $500,000 drug left out of Australia’s Lifesaving Drugs Program

Pompe in the Press (The Courier-Mail, Australia): “Father-of-three Brad Gibson has been handed a ‘pretty bleak Christmas’ after...
Author: Press
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December 20, 2010

Court rejects reimbursement for adult Pompe patient in Switzerland

Gesundheitlicher Nutzen nicht nachgewiesen Pompe in the Press (NZZ Online, Switzerland): (in German) “Eine Aargauerin darf ein jährlich...
Author: Press
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December 20, 2010

Survivor joins fight for vital drug

Pompe in the Press (The Courier-Mail, Australia): “…The medication, called Myozyme, is not expected to be included in...
Author: Press
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December 9, 2010

Chloe’s Story – CBS (USA)

Chloe’s story was aired on the local CBS 5/58 channel in preparation for the MDA telethon {youtube}aJSajeOMC6U{/youtube}
Author: YouTube
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September 1, 2010

BioMarin Receives Orphan Drug Designation for Pompe Disease from the FDA

Excerpt from August 30, 2010 press release: BioMarin Pharmaceutical Inc. announced today that it has received orphan drug...
Author: BioMarin
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August 29, 2010

Statement from IPA concerning Lumizyme Approval

On May 24, 2010 the Food and Drug Administration (FDA) approved Lumizyme for treatment of “patients 8 years...
Author: IPA
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May 28, 2010

Genzyme Pompe Program Update – FDA Approves Lumizyme

On May 24, 2010 the Food and Drug Administration (FDA) approved Lumizyme for treatment of “patients 8 years...
Author: Genzyme
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May 26, 2010

Pompe Program Update

Genzyme would like to provide a brief update to the global Pompe community related to some recent delays...
Author: Genzyme
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April 22, 2010
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