Rare Disease Week

02/24/2019

WHEREAS, in the United States, a disease is considered rare if it afflicts fewer than 200,000 Americans; and

WHEREAS, there are nearly 7,000 diseases and conditions considered rare in the United States, cumulatively affecting between 25 and 30 million Americans; and

WHEREAS, individuals and families suffering from rare diseases often experience diagnosis delay, difficulty finding a medical expert, and a lack of access to treatments or ancillary services; and

WHEREAS, these diseases can be debilitating and make patients and their families feel isolated by their uncommon experience; and  

WHEREAS, experts on rare diseases generally agree that the majority of rare diseases – perhaps 80 percent or more – are genetic in origin; and 

WHEREAS, the National Organization for Rare Disorders (NORD) is having its annual nationwide observance of Rare Disease Day on the last day in February to recognize the courage of those fighting rare diseases, including patients and their families, medical professionals, and scientific researchers; and

WHEREAS, Rare Disease Week is an opportunity to raise awareness of those affected by rare diseases and encourage continued research by medical professionals;

NOW, THEREFORE, I, Ralph S. Northam, do hereby recognize February 24-28, 2019, as RARE DISEASE WEEK in our COMMONWEALTH OF VIRGINIA, and I call this observance to the attention of all our citizens.