Rare Disease Day (February 29, 2016) Copyright 2014
City of Dubuque Proclamation(s) # 2.
ITEM TITLE: Rare Disease Day(February 29, 2016)
SUMMARY:
SUGGESTED DISPOSITION:
ATTACHMENTS:
Description Type
Rare Disease Day Proclamation Supporting Documentation
THF.CI I'Y OF
DUB E
Masterpiece on the Mississippi
WHEREAS, there are nearly 7,000 diseases and conditions considered rare (each affecting fewer
than 200,000 Americans) in the United States; and
WHEREAS, rare diseases as a group affect almost 30 million Americans. Many are serious and
cause 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 parents and
their families must bear a large share of the burden for things such as raising funds for
research; 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.
Patients, medical professionals, researchers, government officials, and companies
developing treatments for rare diseases are joining together to focus attention on rare
disease as a public health issue on that day.
NOW THEREFORE, I, ROY D. BUOL, MAYOR OF THE CITY OF DUBUQUE, IOWA, ON BEHALF
OF THE CITY COUNCIL, STAFF AND THE CITIZENS OF DUBUQUE, DO HEREBY PROCLAIM
THE 29TH DAY OF FEBRUARY, 2016 AS
"RARE DISEASE DAY"
IN THE CITY OF DUBUQUE, IOWA.
IN WITNESS THEREOF, I have hereunto set my
hand and caused the Great Seal of the City of
Dubuque to be affixed this 15th day of February, 2015.
Roy D. Buol, Mayor
Attest:
Kevin S. Firnstahl, CMC, City Clerk
2015: Submitted and accepted by Marla Cruise.