An exciting new piece of legislation known as the RARE Act (Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115) was recently introduced by Congressmen Carson and Costello. This legislation would greatly help the rare disease community by:
- Increasing 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)
- Creating 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”
- Educating physicians on rare diseases through new programs at the Agency for Healthcare Research and Quality (AHRQ), and,
- Commissioning additional research on how to better incentivize rare disease therapeutic development.
Today, NORD sent a letter in support of the RARE Act to Congress that was signed by over 100 rare disease patient organizations (to view or share the letter, please click here).
NORD is incredibly grateful for those organizations that lent their support. We hope the rare disease community will join us by calling and emailing their Representatives to make our community’s message loud and clear!