[Congressional Record Volume 168, Number 36 (Monday, February 28, 2022)]
[Extensions of Remarks]
[Pages E185-E186]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                   IN RECOGNITION OF RARE DISEASE DAY

                                 ______
                                 

                         HON. G.K. BUTTERFIELD

                           of north carolina

                    in the house of representatives

                       Monday, February 28, 2022

   Mr. BUTTERFIELD. Madam Speaker, I rise today in recognition of Rare 
Disease Day and to recognize the extraordinary challenges faced by 
Americans with rare diseases.
  A disease is considered rare when it affects fewer than 200,000 
people in the United States. Rare diseases are far more common than 
they sound. Over 7,000 different rare diseases have been identified to 
date. Unfortunately, only 10 percent of rare diseases have FDA-approved 
treatments.
  To combat rare disease, we must not only make significant investments 
in research and treatments but address the racial disparities that 
exist within the rare disease community. While 25 to 30 million 
Americans have a rare disease, there are significant racial differences 
and people of color are particularly vulnerable to some rare conditions 
like sickle cell disease. From diagnosis to treatment, people of color 
face significant barriers to care. For example, on average it takes a 
rare disease patient 6 years to achieve a correct diagnosis, but for 
patients of color it can take even longer. Additionally, despite making 
up more than 38 percent of the U.S. population, people of color 
comprise only 16 percent of research study participants. 
Underrepresentation in research studies leads to a lack of 
understanding of effective treatments.
  Health equity should factor into every aspect of the rare disease 
landscape, from diagnosis to research and treatment. I commend the work 
of organizations such as the Rare Disease Diversity Coalition (RDDC), 
comprised of rare disease experts, health and diversity advocates, and 
industry leaders dedicated to accelerating and advancing health equity 
for rare disease patients of color. Last November, the

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RDDC, together with Global Genes, hosted the RARE Health Equity Summit, 
which convened a diverse network of rare disease stakeholders to 
explore and address gaps in diagnoses faced by patient of color.
  Madam Speaker, as the proud Sponsor of H. Res. 948, a resolution 
recognizing Rare Disease Day and those individuals living with rare 
diseases, I urge my colleagues to join me in acknowledging the 
importance of health equity and the desperate need for robust rare 
disease research.

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