Rare Disease Day
Proclamation
By the Governor of Alabama
WHEREAS, there are nearly 7,000 diseases and conditions considered rare (each affecting fewer than 200,000 Americans) in the United States, according to the National Institutes of Health (NIH); and
WHEREAS, while each of these diseases may affect small numbers of people, rare diseases as a group affect almost 30 million Americans; and
WHEREAS, many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and
WHEREAS, while more than 450 drugs and biologics have been approved for the treatment of rare diseases according to the Food and Drug Administration (FDA), millions of Americans still have rare diseases for which there is no approved treatment; and
WHEREAS, individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services; and
WHEREAS, while the public is familiar with some rare diseases such as “Lou Gehrig’s disease” and sympathetic to those affected, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments; and
WHEREAS, thousands of residents of Alabama are among those affected by rare diseases since nearly one in 10 Americans have rare diseases; and
WHEREAS, thousands of patients and caregivers, medical professionals, researchers, companies developing products to treat people with rare diseases, and others in the state of Alabama will participate in the observance of Rare Disease Day:
NOW, THEREFORE, I, Robert Bentley, Governor of Alabama, do hereby proclaim February 29, 2016, as
Rare Disease Day
in the State of Alabama.
Given Under My Hand and the Great Seal of the Office of the Governor at the State Capitol in the City of Montgomery on the 1st day of February 2016.
Robert Bentley
Governor
Provided by the Office of the Governor of Alabama | governor.alabama.gov