Even though Gaucher disease is one of the better known rare diseases and diagnostic testing is available, some patients still go for 10 years or longer without getting an accurate diagnosis after symptoms first appear. read more >
Posted at August 29, 2013 3:27 pm by Paul Melmeyer
It seems like just yesterday the Supreme Court handed down its controversial decision to uphold much of President Obama’s monumental healthcare reform bill, the Affordable Care Act. But with just a little over a month until the health insurance marketplaces open for enrollment on October 1st, it is now more important than ever to understand how healthcare reform affects you. read more >
One of my favorite moments at NORD’s recent 30th Anniversary celebration was seeing Abbey Meyers and Congressman Henry Waxman reconnect. The two played leading roles in the drama that resulted in the Orphan Drug Act of 1983. Both went on to provide key leadership on related issues — Abbey as the president of NORD for its first 25 years and Rep. Waxman in Congress.