At a time of unprecedented polarization in Congress, two U.S. lawmakers — one Republican, one Democrat — are stressing the urgency…
Articles by Larry Luxner
Retrophin and the U.S. subsidiary of Britain’s Horizon Pharma will each donate $3 million over a six-year period…
In recognition of Rare Disease Day 2018, Bionews Services — which publishes this website — will attend and…
A rock-painting contest in Las Vegas. A fashion show in New York. A 7,000-meter race around the Washington Monument that’ll…
A preliminary recommendation against British National Health Service insurance coverage of the $702,000-a-year therapy Brineura (cerliponase alfa) to treat…
David Curtis Glebe, a retired 64-year-old public prosecutor now living in Millsboro, Delaware, knows he’s lucky to be alive. In…
This week marks the launch of the “7,000 Mile Rare Movement,” a nationwide effort to raise money for research into…
The National Organization for Rare Disorders (NORD) says it’s “disappointed and dismayed” after the House of Representatives voted 227-205…
WASHINGTON — As the Batten Disease Support and Research Association celebrates its 30th anniversary, the group’s executive director says scientists…
Children’s National Health System no longer treats just kids. Its Rare Disease Institute, launched in April 2017, has partnered with…