Rare Disease Day


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; 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 approximately 340 orphan drugs and biologics have been approved for the treatment of rare diseases affecting between 11 and 14 million people according to the Food and Drug Administration, that leaves well over 15 million Americans with rare diseases who have no treatment specific to their disease; and

WHEREAS, individuals and families affected by rare diseases often experience problems such as a sense of isolation, difficulty in obtaining an accurate and timely diagnosis, few treatment options, and problems related to accessing or being reimbursed for treatment; and

WHEREAS, some rare diseases, such as “Lou Gehrig’s disease” and Huntington’s disease, are relatively well known, many others are not known at all by the public so that patients and their families must bear a large share of the burden for things such as raising funds for research; 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, the National Organization for Rare Disorders (NORD) is organizing a nationwide observance of Rare Disease Day on the last day in the month of February each year and patients, medical professionals, researchers, government officials, and companies developing treatments for rare diseases are joining together to focus attention on rare diseases as a public health issue on that day:

NOW, THEREFORE, I, Robert Bentley, Governor of Alabama, do hereby proclaim February 28th, 2017, 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 2017.

Robert Bentley