Rep. Joseph Crowley (D-NY) and Fred Upton (R-MI) have formed the Rare and Neglected Disease Caucus. A Congressional caucus is formed by members of Congress to provide a forum for specific issues or legislation of interest to a specific group. A number of caucus groups exist in the Congress. Their main function is to help draw attention to issues of importance to their membership.
The Rare and Neglected Disease Caucus intends to begin by focusing on the following issues:
Bringing greater Congressional attention to the more than 6,000 rare and orphan diseases that currently have no FDA approved treatments;
Ensuring sufficient funding for rare disease research and medical device development;
Ensuring ways to incentivize companies to develop products for rare diseases;
Providing a forum for Congressional representatives and various stakeholders in the rare disease community to come together to discuss issues of common concern.