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Bardet Biedl Syndrome Foundation

Connecting families and sharing information on research, treatment, and therapies for Bardet Biedl Syndrome.

The Strange World of Drugs for Rare Diseases

Here’s a New York Times article from today that explains the strange world of drugs for rare, or orphan, diseases. A new drug for Short Bowel Syndrome, which affects about 5000 people in the US, will cost $300,000 a year. But the company that makes the drug provides it for free to people without insurance and pays for “coordinators” that help get insurance companies to pay for it for those who do. No person, apparently, pays more than $10 a month out-of-pocket. 

Making “Every Patient Counts” A Business Imperative