Cost Per Year for U.S. Patients With Rare Maladies

Pompe Disease

About 7,500 patients

Myozyme

Sanofi

$575,400*

Paroxysmal Nocturnal Hemoglobinuria

About 1,500

Soliris

Alexion Pharmaceuticals

$440,000

Short Bowel Syndrome

3,000 to 5,000

Gattex

NPS Pharmaceuticals

$295,000

Cystic Fibrosis With G551D Mutation

About 1,200

Kalydeco

Vertex Pharmaceuticals

$294,000

*COST FOR MANUFACTURER’S RECOMMENDED DOSAGE; DATA: COMPANY REPORTS, NIH

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