[Congressional Record Volume 166, Number 26 (Friday, February 7, 2020)]
[Extensions of Remarks]
[Pages E152-E153]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




 RESOLUTION EXPRESSING SUPPORT FOR THE DESIGNATION OF THE LAST DAY OF 
               FEBRUARY EACH YEAR AS ``RARE DISEASE DAY''

                                 ______
                                 

                           HON. ANDRE CARSON

                               of indiana

                    in the house of representatives

                        Friday, February 7, 2020

  Mr. CARSON of Indiana. Madam Speaker, I am pleased to reintroduce 
this resolution with my colleague Rep. Richard Hudson of North 
Carolina. Our resolution supports the designation of Rare Disease Day 
on the last day of February. I am pleased that this resolution has been 
endorsed by the National Organization for Rare Disorders (NORD) and am 
thankful for its leadership on these critical issues over many years.
  Nearly one in ten Americans live with one or more of the roughly 
7,000 known rare diseases. More than half of those struggling with rare 
diseases--defined as affecting less than 200,000 people--are children. 
Sadly, many rare diseases and conditions are serious, life-threatening, 
and lack effective treatments. These are not just statistics: I am sure 
most of us know at least one family member or friend who has been 
affected by or struggled with the unique challenges of rare diseases.
  Moreover, as we observe Black History Month, it's important to know 
that African Americans and other minorities are especially vulnerable 
to rare diseases, including Sickle Cell Anemia and Sarcoidosis. These 
diseases and conditions--including Thalassemia and Hereditary ATTR 
(hATTR) amyloidosis--disproportionately affect African Americans. 
Despite these unique obstacles, African Americans have an inspiring 
tradition of both combatting rare diseases and improving medical 
science.
  One great example is Dr. Charles Drew, an African American scientist 
who helped found the modern ``blood bank,'' which helped dramatically 
expand blood transfusions. A faculty member at Howard University, Dr. 
Drew's pioneering work in blood transfusions took place against the 
backdrop of segregation and discrimination. During his time overseeing 
the Red Cross's blood plasma donation program, Dr. Drew was prohibited 
from donating his own blood because of the color of his skin. Despite 
these obstacles, Dr. Drew's work improved the practice of blood 
transfusions, which is now a lifeline for many individuals struggling 
today with rare diseases. The examples of Dr. Drew and countless other 
researchers, physicians, nurses, activists, and patients underscore the 
importance of bringing additional awareness to rare diseases.
  Despite the many challenges, some progress has been made. More than 
840 drugs and biologics have been approached by the Food and Drug 
Administration (FDA) for the treatment of rare diseases. However, 
Congress must do more to combat rare diseases. That's why in September 
of 2019, Rep. Hudson and I introduced the Rare disease Advancement, 
surveillance Research, and Education (RARE) Act of 2019 (H.R. 4228). 
Our legislation, cosponsored by 57 bipartisan Members of Congress, 
expands the ability of the National Institutes of Health (NIH) and 
Centers for Diseases Control and Prevention (CDC) to study rare 
diseases by improving

[[Page E153]]

treatment, research, and diagnostics of rare diseases through new and 
existing programs.
  More work needs to be done to bring attention to the needs of those 
who struggle with rare diseases, and to celebrate their courage. That's 
why Rep. Hudson and I are introducing this important resolution. Each 
year, many individuals with rare diseases and their loved ones 
celebrate Rare Disease Day to share their stories and educate 
communities of researchers, health professionals, governments, and 
community organizations about how rare diseases affect them.
  In 2019, more than 100 countries observed Rare Disease Day. Our 
resolution expresses support for the designation of the last day of 
this month as Rare Disease Day. Congress should recognize this work and 
improve our efforts to address the challenges facing the rare disease 
patient community.
  Madam Speaker, I hope my colleagues will join us in supporting Rare 
Disease Day's designation on the last day of February to better 
champion people with rare diseases. I urge the House to support this 
resolution.

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