Please contact your Members of Congress and urge them to join the Rare Disease Congressional Caucus. Click the link above to enter your information and automatically send an email to your Members.
Thank you to our 2019 Rare Disease Caucus Sponsors:
For more information about sponsoring a Rare Disease Congressional Caucus Briefing contact: Carol Kennedy, firstname.lastname@example.org
December 4, 2019-The Economic Burden of Rare Diseases
September 11, 2019-The Importance of the Newborn Screening Saves Lives Act
May 15, 2019 – New Technologies and Treatments for Rare Diseases
February 27, 2019 – Rare Disease 101
December 4, 2018 – The Diagnostic Odyssey
September 12, 2018 – 35 Years Later: The Orphan Drug Act
July 19th, 2018 – Rare Diseases on the Brain: Paving the Way for New Therapies
February 28th, 2018 – The Rare Disease Lifecycle: Diagnosis to Treatment
November 15th, 2017 – Diagnostic Challenges for Rare Disease Patients
September 13th, 2017 – Curing Rare Disease: Policy and Regulation Needed for Emerging Technology
May 18th, 2017 – Incentivizing Innovation for Rare Disease Treatment Development
March 2nd, 2017 – Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform
November 15th, 2016 – Driving Innovation for Lifesaving Therapies through PDUFA Reauthorization in 2017
September 14th, 2016 – Strengthening Medical Innovation in America for Rare Disease Patients
May 18th, 2016 – The NIH and FDA: Vital Agencies in the Fight Against Rare Diseases
March 3rd, 2016 – The Rare Disease Ecosystem: Fostering Patient Engagement & Driving Biomedical Innovation
Nov. 5th, 2015 – Precision Medicine: New Frontiers for Rare Diseases
May 21st, 2015 – 21st Century Cures Initiative: Priorities for the Rare Disease Community
Feb. 26th, 2015 – Urgent Healthcare Policy Needs of the Rare Disease Community
Nov 13th, 2014 – Creating Economic Incentives to Spur the Development of Treatments for Ebola and Other Life-Threatening Rare Diseases
Sept. 17th, 2014 – Implementation of Rare Disease Provisions in FDASIA
May 7th, 2014 – Access to Care & Therapies in the New Healthcare System: A Rare Disease Perspective
Feb. 28th, 2014 – Science Behind Rare Disease Policy, Feat. Special Guest Jonny Lee Miller
The Congressional Rare Disease 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.
The bipartisan (comprising both Democrats and Republicans) Rare Disease Caucus was established in 2010 by original Co-Chair Congressman Fred Upton (R-MI). The caucus is now bicameral (in both House and Senate) and has more than 100 members in the House. In the 115th Congress, Representatives Leonard Lance (R-NJ) and GK Butterfield (D-NC) serve as co-chairs. In late 2015, Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN) agreed to serve as co-chairs in the Senate. The Congressional Rare Disease Caucus provides a vital platform for discussing pressing policy issues on rare diseases.
A congressional caucus is a group of members of the United States Congress that meets to pursue common legislative objectives. Formally, caucuses are formed as congressional member organizations (CMOs) through the United States House of Representatives and governed under the rules of that chamber. There are hundreds of Caucuses. The most common caucuses consist of members united as an interest group. A Caucus can hold briefings to raise awareness on an issue. However, briefings are not actionable, ie: no bills can be introduced or voted on. A Caucus may join Members together in a voting block to support or oppose legislation, however most interest group caucuses are used to gain media attention and raise public awareness. Congressional Caucuses must be re-filed in the House at the start of each new Congress. The filing papers must be submitted by the majority party.