[Congressional Record Volume 167, Number 37 (Friday, February 26, 2021)]
[Extensions of Remarks]
[Pages E175-E176]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




REINTRODUCTION OF THE 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 26, 2021

  Mr. CARSON. 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 modem ``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

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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. In addition, 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 reintroducing 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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