Written by on March 15, 2017
2017 Honoree
Rare Impact Awards

Beth Nguyen, R.N.
Mother, wife, nurse, patient, advocate, and leader; Beth Nguyen wears multiple hats, and not one loosely.
In 2007, before she began to experience health problems, Beth had a job she loved as… Read More
Written by Jennifer Huron on December 13, 2016
Today, President Obama signed into law the 21st Century Cures Act, a game-changing bill for medical innovation. The bill includes many provisions that will improve the discovery, development, and delivery of orphan therapies for rare disease patients, including:
Written by Jennifer Huron on December 7, 2016

Senate Passes Landmark 21st Century Cures Act
Washington, D.C., December 7, 2016—Today, the United States Senate overwhelmingly approved the 21st Century Cures Act, a game-changer for medical innovation, by a bipartisan vote of 94-5. The President is expected to… Read More
Written by Jennifer Huron on November 29, 2016

We are excited to announce that U.S. lawmakers have finally reached an agreement on the 21st Century Cures Act, a game-changer for patients with rare diseases. This agreement comes more than one year after the House passed its original version of the bill. The first vote is expected to take place… Read More