09/05/2017
https://www.congress.gov...
"For me and for, I think, a lot of Members of Congress, we can't go through a week, or sometimes even a day, without being both informed and inspired by constituents who come to us with a problem, or s..."
"This startling and disturbing fact should evoke not just concern, but action."
"the NIH spends a substantial amount on research on various rare diseases, including those affecting children, but with over 6,000 known rare diseases, not every one has been fully addressed."
"without a statement of policy on rare diseases and orphan products, it is not possible [for the FDA] to ensure consistency in that process."