Senate Resolution 106 - Introduced SENATE RESOLUTION NO. 106 BY BEALL , BOLKCOM , ANDERSON , DVORSKY , DOTZLER , BOWMAN , PETERSEN , TAYLOR , COURTNEY , GRONSTAL , BERTRAND , BEHN , BREITBACH , SINCLAIR , JOHNSON , SCHNEIDER , SEGEBART , GREINER , FEENSTRA , ROZENBOOM , GARRETT , HOUSER , ZUMBACH , WHITVER , SMITH , ZAUN , MATHIS , SCHOENJAHN , RAGAN , and BRASE A Resolution recognizing February 28, 2014, as Rare 1 Disease Day in Iowa. 2 WHEREAS, there are nearly 7,000 diseases and 3 conditions that are considered rare in the United 4 States; and 5 WHEREAS, each of these diseases and conditions 6 affect fewer than 200,000 Americans; and 7 WHEREAS, while each of these diseases may affect 8 relatively limited numbers of people, rare diseases as 9 a group affect almost 30 million Americans; and 10 WHEREAS, many rare diseases are serious and 11 debilitating conditions that have a significant impact 12 on the lives of those affected; and 13 WHEREAS, while approximately 340 orphan drugs and 14 biologics have been approved for the treatment of 15 rare diseases affecting between 11 and 14 million 16 people according to the United States Food and Drug 17 Administration, that leaves more than 15 million 18 Americans with rare diseases who have no treatment 19 specific to their disease; and 20 WHEREAS, individuals and families affected by rare 21 diseases often experience problems such as a sense 22 of isolation, difficulty in obtaining an accurate 23 -1- LSB 6097SS (3) 85 jr/rj 1/ 2

S.R. 106 and timely diagnosis, few treatment options, and 24 problems related to accessing or being reimbursed for 25 treatment; and 26 WHEREAS, even though some rare diseases, such as 27 Lou Gehrig’s disease and Huntington’s disease, are 28 relatively well known, many others are not known at all 1 by the public so that patients and their families must 2 bear a large share of the burden for activities such as 3 raising funds for research; and 4 WHEREAS, thousands of residents of Iowa are among 5 those affected by rare diseases since nearly 1 in 10 6 Americans have rare diseases; and 7 WHEREAS, the National Organization for Rare 8 Disorders, an organization established in 1983, 9 organizes a nationwide observance of Rare Disease 10 Day on the last day in the month of February each 11 year, on which patients, medical professionals, 12 researchers, government officials, and companies 13 developing treatments for rare diseases join together 14 to focus attention on rare diseases as a public health 15 issue; and 16 WHEREAS, Rare Disease Day is anticipated to be 17 observed globally for years to come, providing hope 18 and information for rare disease patients around the 19 world; NOW THEREFORE, 20 BE IT RESOLVED BY THE SENATE, That the Senate 21 recognizes February 28, 2014, as Rare Disease Day in 22 Iowa. 23 -2- LSB 6097SS (3) 85 jr/rj 2/ 2