Congressmen Andre Carson (D-IN) and Ryan Costello, (R-PA) have introduced the Rare disease Advancement, Research and Education Act (H.R.5115) to the U.S. House of Representatives. The HPS Network has joined more than 100 other patient organizations and the National Organization for Rare Disorders, in support of the legislation.
The Rare Act of 2018 would:
- Increase rare disease research funding at the National Institutes of Health (NIH) by authorizing an additional $10 million each year for the Rare Disease Clinical Research Network (RDCRN)
- Create new efforts to track and combat rare diseases at the Centers for Disease Control and Prevention (CDC) by creating the “National Rare Disease or Condition Surveillance System”
- Educate physicians on rare diseases through new programs at the Agency for Healthcare Research and Quality (AHRQ), and,
- Commission additional research on how to better incentivize rare disease therapeutic development.