Recognizing Rare Disease Day

Floor Speech

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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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