Rare disease voucher program [Video]

MADISON, Wis. (WBAY) – Rare diseases impact one out of every 10 Americans, but a voucher to incentivize drug companies to research rare disease treatments expired earlier this month after being cut from the recent congressional spending bill.

“I’m a mom to five boys and caregiver to one that has a rare genetic condition called Prader-Willi syndrome,” Katie Moureau said.

95% of rare diseases, like Prader-Willi syndrome, have no treatment.

“I was told by doctors to be prepared, he’s going to have a short life,” Moureau said.

A mother-turned-advocate, Katie Moureau is hoping Congress will extend the Rare Pediatric Priority Review Program, to incentivize drug companies to find a cure for her son

“Right now they see the voucher program as a major financial incentive to develop treatments for rare disorders,” Dr. Stephen Meyn, Center for Rare Diseases, UW-Madison, said.

Dr. Stephen Meyn, the Director of the UW-Center for Human …