Governor Proclaims Rare Disease Day 2024

WHEREAS, a rare disease is a condition that affects fewer than 200,000 people in the United States, according to the Centers for Disease Control and Prevention, and approximately 7,000 rare diseases affect people worldwide; and

WHEREAS, each of these diseases distinctly affects a relatively small number of people; however, there are an estimated 30 million Americans living with some form of rare disease; and

WHEREAS, 95 percent of all rare diseases do not have a single FDA approved drug treatment, leaving millions of Americans with diseases without an approved treatment; and

WHEREAS, individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and limited access to treatments or ancillary services, leaving many people affected by less widely known rare diseases to bear a greater share of burden of funding research, and raising public awareness to support the search for treatments; and

WHEREAS, the National Organization for Rare Disorders organizes an annual, global observance of Rare Disease Day on the last day of February each year; and

WHEREAS, the State of North Carolina recognizes the many patients, caregivers, medical professionals, researchers, and individuals working to combat rare diseases in our state, and encourages people to raise awareness and support for those affected by rare diseases and their families in our communities;

NOW, THEREFORE, I, ROY COOPER, Governor of the State of North Carolina, do hereby proclaim February 29, 2024, as “RARE DISEASE DAY” in North Carolina, and commend its observance to all citizens.