A proclamation: Rare Diseases Day, Jan. 17, 2014

BY THE GOVERNOR OF THE STATE OF GEORGIA

WHEREAS: WHEREAS: WHEREAS:
WHEREAS: WHEREAS: WHEREAS: WHEREAS:
THEREFORE:

A PROCLAMATION
RARE DISEASES DAY
There are nearly 7,000 diseases and conditions considered rare, each affecting fewer than 200,000 individuals in the Uniteq States. While each of these diseases may affect small numbers of people, rare diseases as a group affect almost 30 million Americans; and
Many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected. Nearly one in ten Americans are affected by rare diseases, thousands of whom are residents of Georgia; and
Treatment for many rare diseases is insufficient, as are social networks to support individuals with rare diseases and their families. While many days are dedicated to sufferers of individual diseases like AIDS, Breast Cancer, and others, sufferers of rare diseases like Adenoid Cystic Carcinoma, Urea Cycle Disorder, Progeria, or Acquired von Willebrand's Disease were not recognized until 2009; and
Only five percent of rare diseases have approved drug treatments. While nearly 330 orphan drugs and biologics have been approved for the treatment of rare diseases, according to the Food and Drug Administration, there are well over 15 million Americans with rare diseases who have no treatment specific to their disease; and
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
Some rare diseases, such as "Lou Gehrig's disease" and Huntington's disease, are relatively well known, but many others are not known by the public so that patients and their families must bear a large share of the burden for challenges such as raising funds for research; and
The National Organization for Rare Disorders recognizes that it takes a dedicated team to tackle these challenges and celebrates all who come together in support of the rare disease community, including medical professionals, researchers, government officials, advocates, and biotech companies developing orphan drugs for rare diseases. On February 28, 2014, the national observance of Rare Disease Day focuses attention on the unsung heroes who commit themselves to rare diseases as a public health issue; now
I, NATHAN DEAL, Governor of the State of Georgia, do hereby proclaim February 28, 2014, as RARE DISEASES DAY in Georgia.
In witness thereof, I have hereunto set my hand and caused the Seal of the Executive Department to be affixed this 17th day of January in the year of our Lord two thousand fourteen.

GOVERNOR
ATTEST
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