07/21/2009
https://www.congress.gov...
"The National Organization for Rare Disorders (NORD) has been a leader for decades in the effort to increase information on the diagnosis and treatment of rare disorders."
"But for now, you are not suggesting any Federal regulation?"
"Well, that is a Shonda, as we say."
"Thank you for holding today's hearing on this important issue to seniors in Minnesota and across the country."