This week marks the launch of the “7,000 Mile Rare Movement,” a nationwide effort to raise money for research into…
Articles by Larry Luxner
Karen Haberberg, a New York portrait photographer, has taken tens of thousands of pictures throughout her career of families, couples,…
The National Organization for Rare Disorders (NORD) says it’s “disappointed and dismayed” after the House of Representatives voted 227-205…
Children’s National Health System no longer treats just kids. Its Rare Disease Institute, launched in April 2017, has partnered with…
More therapies are now available for the 30 million or so people with rare diseases in the U.S. than ever…
As Congress begins debate this week to overhaul the U.S. tax code, lawmakers should leave the Orphan Drug Act (ODA)…
Orphan drug development, rising healthcare costs, patient assistance programs and controversial right-to-try legislation are of paramount interest to the parents…
With nearly 7,000 rare diseases, including Duchenne muscular dystrophy, affecting an estimated 30 million Americans, it’s hard for Paul Melmeyer…
For years, Lexi Pappas hid the fact she had facioscapulohumeral dystrophy (FSHD) — a hereditary muscle wasting disorder that…
Thirty-three years ago, doctors told Pat Furlong that her two sons, Christopher and Patrick, had Duchenne muscular dystrophy (DMD). Ten…