Hawken Miller,  features writer—

As a high-school student in the suburbs of Boston, Seth Rotberg watched his mother’s mental and physical health deteriorate because of Huntington’s disease. Rotberg was embarrassed to go out in public. People would stare, despite the 15-year-old’s best attempts to explain that her drunk-like movements were…

Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 webinar.  William Whitman…

The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. Yet even with its enormous resources, the FDA these days relies more and more on patients to…