[Congressional Record Volume 163, Number 28 (Thursday, February 16, 2017)]
[House]
[Page H1256]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                  RARE DISEASES ARE NOT A RARE PROBLEM

  (Mr. BILIRAKIS asked and was given permission to address the House 
for 1 minute and to revise and extend his remarks.)
  Mr. BILIRAKIS. Mr. Speaker, I rise today on behalf of the 30 million 
Americans affected by a rare disease. An astounding 95 percent of rare 
diseases have no approved treatments or cures. My bill, the OPEN Act, 
seeks to change that.
  The OPEN Act provides incentives for drug makers to repurpose major 
market treatments for rare disease patients. It could open the door for 
a surge in biotechnology jobs and investment. Most importantly, the 
OPEN Act would help make sure those suffering from a rare condition can 
finally find safe, effective, affordable medication.
  I was inspired to write the OPEN Act after meeting with folks who 
live with rare diseases, like Ashleigh Pike, Candace Lerman, and Kelly 
Freeman from Florida. The ideas that shaped this legislation came from 
those who it will help most, rare disease patients. After all, rare 
diseases are not a rare problem.
  The OPEN Act has the potential to bring hope to millions of patients 
and their families.

                          ____________________