[Congressional Record (Bound Edition), Volume 163 (2017), Part 3]
[House]
[Page 3240]
[From the U.S. Government Publishing Office, www.gpo.gov]




                           RARE DISEASE WEEK

  The SPEAKER pro tempore. The Chair recognizes the gentleman from New 
Jersey (Mr. Lance) for 5 minutes.
  Mr. LANCE. 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.

                              {time}  1015

  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.

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