As reported by Valley News Live, Senator Amy Klobuchar (D-MN) has long been a supporter of the rare disease community. In the past, Senator Klobuchar has spoken at virtual press conferences with the EveryLife Foundation for Rare Diseases (“EveryLife”), as well as co-sponsored the BENEFIT Act; this Act would ensure that patient experiences are included in the drug development process to place a greater importance on patient-focused drug development (PFDD).

Her actions and her willingness to hold discourse mean that Senator Klobuchar continues to advance rare disease education and understanding. During Rare Disease Week, Senator Klobuchar also met with advocates within the rare disease community to discuss the need for appropriations and legislation.

Currently, over 10,000 different rare diseases have been identified. With new advances in genetic testing and other testing frameworks, new diseases are being identified each month. More than 95% of these diseases do not have FDA-approved treatment options. For individuals who are treating their condition with off-label products, these may not be covered by insurance. The financial and treatment burdens of rare disease are substantial. Advancing research into rare diseases will play a huge role in improving quality-of-life for patients and families across the country.

As part of her efforts to expand rare disease awareness, Senator Klobuchar is Co-Chair of the Rare Disease Congressional Caucus alongside Representative Gus Bilirakis (R-FL), Congresswoman Doris Matsui (D-CA), and Senator Roger Wicker (R-MS). This bicameral, bipartisan caucus is designed to advance policy and legislation relating to issues facing the rare disease community. 

More About the Rare Disease Congressional Caucus 

Rare Disease Legislative Advocates (RDLA) further explains that the Rare Disease Congressional Caucus is:

“a forum for Members of Congress to voice constituent concerns, collaborate on ideas, facilitate conversations between the medical and patient community, and build support for legislation that will improve the lives of people with rare diseases.”

For a full list of Caucus members, head here.