It has worked phenomenally for organizations like the Cystic Fibrosis Foundation and the Multiple Myeloma Research Foundation.

FORBES: The NIH Gets Into The Drug Development Business

The result is a big win for developer Vertex Pharmaceuticals and its partner, the Cystic Fibrosis Foundation, a patient group.

FORBES: Vertex May Make History With Cystic Fibrosis Drug

But she gives much of the credit for her active life not to her diligence but to a 53-year-old patient advocacy group, the Cystic Fibrosis Foundation.

FORBES: Magazine Article

The early successes of the Cystic Fibrosis Foundation were just about the only lifeline Kathryn Giusti had when she was diagnosed with multiple myeloma in 1996.

FORBES: Magazine Article

Beall, of the Cystic Fibrosis Foundation, Bethesda, Md.

FORBES: Charity Begins With The Boss

Cystic Fibrosis Foundation, the disease advocacy group that funded the early work on Kalydeco, had always intended to find a way to make the medicine work in patients whose disease was caused by other genes.

FORBES: Personalized Cystic Fibrosis Drugs Get A Booster Shot