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Channel: The Addi and Cassi Fund - Niemann Pick Type C » Kakkis Every Life Foundation
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New FDA ‘Rare Disease’ Division Being Proposed to U.S. House Committee on...

The Kakkis Every Life Foundation is leading the effort to request $10 million in the fiscal year 2011 Ag-Rural Development-FDA Appropriations bill directing the U.S. Food and Drug Administration to...

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Orphan Drug Act – A Collosal Failure Considering Rare Disease Drug Statistics

For the past week, I have been obsessing over rare disease statistics ever since it was published that 80% of all rare diseases are ‘ultra orphans’ – affecting 6,000 people per disease state or less –...

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