On May 15th, International MPS Awareness Day was observed. For most of the world, this was not a grand event. From what I could tell, it was business as usual — just an ordinary day. But “ordinary” is something that people living with rare, complex and chronic disorders can only imagine. read more >
Summer is right around the corner, which means hot days, grilling, more time outside, and of-course the inevitable rainy-day stuck inside. In preparation for those days, I am trying to compile a list of movies that could make up a “rare disease film festival.” 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.