Check out the Huffington Post blog by PhRMA President & CEO John Castellani and Gregg LaPointe, CEO of Sigma-Tau Pharmaceuticals, Inc. They look at some of the unique research hurdles in the search for new treatments for rare conditions, as well as the urgency of patients hoping and waiting for help in their fight against disease.
"We don't yet have the answers. But we hope that awareness of rare diseases extends beyond a single day, drawing attention not just to the diseases, but to the challenges. And we believe that increased awareness should generate a greater dialogue - one that will ultimately lead to action in the form of support from policymakers who have the opportunity to help spur this life-saving work."
They urge us, while honoring the spirit of Rare Disease Day, to remember that the work to find new cures and treatments isn't limited to a single day but goes on 24/7 all year long. For example, America's biopharmaceutical research companies are today working on more than 400 new medicines to help treat a wide variety of rare diseases.