SR0084 98TH GENERAL ASSEMBLY

SR0084 LRB098 08223 GRL 40791 r

SENATE RESOLUTION

WHEREAS, Rare diseases and disorders are those which affect small patient populations, typically populations smaller than 200,000 individuals in the United States; and

WHEREAS, Nearly 7,000 rare diseases affect millions of Americans and their families; and

WHEREAS, Children with rare genetic diseases account for more than half of the population affected by rare diseases in the United States; and

WHEREAS, Many rare diseases are serious, life-threatening, and lack an effective treatment; and

WHEREAS, Rare diseases and conditions include epidermolysis bullosa, progeria, sickle cell anemia, Tay-Sachs, cystic fibrosis, many childhood cancers, fibrodysplasia ossificans progressiva, and Williams Syndrome; and

WHEREAS, People with rare diseases experience challenges that include difficulty in obtaining an accurate diagnosis, limited treatment options, and difficulty finding physicians or treatment centers with expertise in their disease; and

WHEREAS, Great strides have been made in research and treatment for rare diseases as a result of the Orphan Drug Act and other acts of Congress; and

WHEREAS, The United States Food and Drug Administration and National Institutes of Health have established special offices to advocate for rare disease research and treatments; and

WHEREAS, The National Organization for Rare Disorders, an organization established in 1983 to provide services to, and advocate on behalf of, patients with rare diseases, was a primary force behind the enactment of the Orphan Drug Act and remains a critical public voice for people with rare diseases; and

WHEREAS, The National Organization for Rare Disorders sponsors Rare Disease Day nationwide to increase public awareness of rare diseases; and

WHEREAS, Rare Disease Day has become a global event occurring annually on the last day of February; and

WHEREAS, Rare Disease Day was observed in the United States for the first time on February 28, 2009; and

WHEREAS, Rare Disease Day is anticipated to be observed globally in years to come, providing hope and information for rare disease patients around the world; and

WHEREAS, It is fitting that the Illinois Senate joins in this global observance and takes part in the fight against rare diseases; therefore, be it

RESOLVED, BY THE SENATE OF THE NINETY-EIGHTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we designate the last day of February in 2013 and 2014 as Rare Disease Day in the State of Illinois; and be it further

RESOLVED, That we recognize the importance of improving awareness and encouraging accurate and early diagnosis of rare diseases and disorders; and be it further

RESOLVED, That we wholeheartedly support a State, national, and global commitment to improving access to and developing new treatments, diagnostics, and cures for rare diseases and disorders.