Rare Disease Week
Mr. Speaker, this week we recognize the work of the tireless advocates fighting rare diseases. I have the honor of serving as the Republican chair of the House of Representatives Rare Disease Caucus. I consider it one of the greatest…
Mr. Speaker, this week we recognize the work of the tireless advocates fighting rare diseases.
I have the honor of serving as the Republican chair of the House of Representatives Rare Disease Caucus. I consider it one of the greatest responsibilities of my service to work for innovative treatment and new technologies and to build an atmosphere of appreciation and understanding in Congress for the hard work of all of the patient advocates. Their passion is often driven by the care of loved ones, and their personal stories are profiles in courage.
Hearing from thousands of advocates, many of whom are here in Washington this week, gives the members of the caucus renewed energy and purpose. Events held during Rare Disease Week here on Capitol Hill and at the NIH in Bethesda highlight what has been accomplished and what still needs to be done.
One of those champions joined us in the House Chamber just last evening. I was very proud that President Trump invited New Jersey resident Megan Crowley to his joint session address. Megan's story of combating a terrible rare disease is a testament to the American spirit. Megan is now a student at Notre Dame. I salute her, her parents, and her family for their courage.
Passage of the 21st Century Cures Act was a major accomplishment in the last Congress--indeed, in my opinion, it was the most important piece of legislation passed during the 114th Congress. We worked in a bicameral, bipartisan way. We worked with the White House and with the Department of Health and Human Services. It passed overwhelmingly in the House and in the Senate, and now it is the law of the land.
I am encouraged that the Trump administration will carefully implement its provisions to our healthcare system, improving the healthcare system and to help spur the next great medical innovations.
Congress will join and help direct that effort and proceed through the appropriations process to match progress and research funds.
Right now it takes 15 years for a new drug to move from the lab to the local pharmacy. The CURES Act modernizes clinical trials to expedite the development of new drugs and devices, removes regulatory uncertainty in the development of new medical apps, and breaks down barriers to facilitate increased research collaboration.
Patients with degenerative conditions, cancers, and rare diseases await the genius of these new solutions. We need to do everything we can to help find these cures.
I have met with many rare disease patients, advocates, and their loved ones. Their work is inspiring, and it gives our caucus a mission and a purpose.
Mr. Speaker, I urge my colleagues to join the Rare Disease Caucus and help us in this great cause. In this, the week that we recognize the work of the tireless advocates across the Nation, I salute all of them for what they are doing for the American Nation.