Patrick Dunegan and his wife, Jennifer, met at church, spending time together serving their local community as Kentucky Colonels and through volunteer work with the Jewish Hospital… Read More
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
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