[Congressional Record Volume 170, Number 37 (Thursday, February 29, 2024)]
[Extensions of Remarks]
[Page E195]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




REINTRODUCTION OF THE RESOLUTION EXPRESSING SUPPORT FOR THE DESIGNATION 
             OF FEBRUARY 29, 2024, AS ``RARE DISEASE DAY''

                                 ______
                                 

                           HON. ANDRE CARSON

                               of indiana

                    in the house of representatives

                      Thursday, February 29, 2024

  Mr. CARSON. Mr. 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 
their 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 patients underscore the 
importance of bringing additional awareness to rare diseases.
  Despite the many challenges, some progress has been made. 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.
  More than 100 countries observe 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.
  Mr. 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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