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
WASHINGTON — Terry Jo Bichell earned a master’s degree in public health, became an expert in pregnancy-related deaths, and made…
This year’s FAST Summit & Gala in Chicago generated a record $4.1 million for Angelman syndrome research — more than triple the…
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…
Billed as “Chicago’s largest celebrity fundraiser,” the 2017 FAST Global Summit & Gala aims to raise a record $2…
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)…
Two experts on Angelman syndrome will be among 80 speakers at this month’s Rare Disease & Orphan Products Breakthrough…