Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a…
Articles by Larry Luxner
The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and…
The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live in…
It’s been nearly half a century since the end of Alabama’s Tuskegee experiment, the infamous 40-year study in which the U.S.
It’s not every day a Southeast Asian monarchy bestows a $100,000 prize on a U.S. government research agency. In fact,…
A little-known government entity within the National Institutes of Health (NIH) is helping to lead U.S. efforts to speed…
Genetic sequencing and the speed with which it can help diagnose a child’s disease — in addition to revealing the genes…
When it comes to rare diseases, one that definitely makes the list is spinal muscular atrophy with respiratory distress —…
In his 10 months on the job, Commissioner Scott Gottlieb of the U.S. Food and Drug Administration is earning…
At a time of unprecedented polarization in Congress, two U.S. lawmakers — one Republican, one Democrat — are stressing the urgency…