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A Rare Lysosomal Storage Disease
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UPDATE 2-US FDA panel backs new use for Actelion drug [Zavesca]

UPDATE 2-US FDA panel backs new use for Actelion drug [Zavesca]

Actelion LTD

Actelion LTD

We're a few weeks behind in updating this information but some big steps have happened recently regarding the potential FDA approval for Zavesca. The US Advisory panel on Jan. 12th recommended approval!

This snippet is from the article on Reuters regarding the breaking news:

Doctors can prescribe Zavesca now for NP-C, but Actelion needs FDA clearance to market the drug specifically for that use. Patient advocates also said insurers are reluctant to pay for the drug for NP-C patients without the approval. The drug costs $159,000 a year per patient.

As a family we personally understood what that means because we were blessed to be able to use this drug for a period of time. For other families to be able to experience this will be huge!

Please read the full article here by Lisa Richwine.

UPDATE 2-US FDA panel backs new use for Actelion drug

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