[Congressional Record Volume 170, Number 33 (Friday, February 23, 2024)]
[Extensions of Remarks]
[Page E176]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                      RECOGNIZING RARE DISEASE DAY

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                           HON. CHRIS PAPPAS

                            of new hampshire

                    in the house of representatives

                       Friday, February 23, 2024

  Mr. PAPPAS. Mr. Speaker, I rise today in recognition of Rare Disease 
Day on February 29, 2024. According to the Federal Drug Administration, 
over 7,000 rare diseases affect more than 30 million people in the 
United States. That's nearly one in every ten Americans.
  The National Institutes of Health recognizes more than 7,000 rare 
diseases. Of those 7,000 plus diseases approximately 95 percent have no 
treatment. Instead, many patients receive treatments that are not 
approved by the FDA for their specific conditions. This treatment 
process can lead to patients experiencing difficulty with insurance 
reimbursements. All Americans deserve quality access to affordable 
health care, and we must do more to assist our fellow Americans with 
rare diseases in reaching these standards.
  Rare diseases not only have a debilitating impact on the individuals 
affected but also the families and loved ones who support them. On 
average, individuals with rare diseases do not receive an accurate 
diagnosis for more than four and a half years, in addition to 
difficulty in finding medical experts and treatments for their 
conditions. This leaves patients, families, and caregivers waiting 
indefinitely for diagnoses, treatments, and additional support for 
indefinite periods of time.
  Rare Disease Day is a significant step in increasing public awareness 
and encouraging funding for research into these conditions. It is 
critical that Congress continue to partner with patients, advocates, 
scientists, and health care employees to seek solutions that will 
prioritize public funding for the health, wellness, and treatment for 
all those impacted by rare medical conditions.
  On behalf of my constituents in New Hampshire's First Congressional 
District, I want to commemorate this important day and remind my fellow 
Americans to recognize those impacted by rare diseases, in addition to 
the medical professionals committed to finding treatments for them.

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