DE SCR116

Designates February 29, 2024, as "Rare Disease Day" in Delaware to recognize the impact of rare diseases on residents and raise awareness.

Notes that nearly 7,000 rare diseases affect almost 30 million Americans, with only about 500 having approved treatments despite over 450 drugs and biologics being approved by the FDA.

Highlights that nearly 1 in 10 Americans have rare diseases, meaning thousands of Delaware residents are affected by conditions that often involve diagnosis delays and lack of access to treatments.

References Delaware's establishment of a Rare Disease Advisory Council in July 2023 through SB 55 to raise awareness and make policy recommendations for improving patient access to healthcare services.

Recognizes the National Organization for Rare Disorders' nationwide observance of Rare Disease Day to advance advocacy work at local, national, and international levels.