A resolution designating February 28, 2013, as "Rare Disease Day".

Bill: 113-sres-57
Sponsor: full_name: Sen. Brown, Sherrod [D-OH]
Introduced: 2013-02-26
Policy area: Health
Subjects: Commemorative events and holidays

Health care coverage and access

Health promotion and preventive care

Hereditary and development disorders

Medical research

Medical tests and diagnostic methods

World health
Latest action: action_date: 2013-02-26
text: Submitted in the Senate, considered, and agreed to without amendment and with a preamble by Unanimous Consent. (consideration: CR S879-880; text as passed Senate: CR S878-879)

Summaries:
action_date: 2013-02-26
action_desc: Introduced in Senate
text: <p>Designates February 28, 2013, as Rare Disease Day. Expresses support for a national and global commitment to improving access to, and developing new treatments, diagnostics, and cures for, rare diseases and disorders. </p> <ul> </ul>

action_date: 2013-02-26
action_desc: Passed Senate without amendment
text: <p><b>(This measure has not been amended since it was introduced. The summary of that version is repeated here.)</b></p> <p>Designates February 28, 2013, as Rare Disease Day. Expresses support for a national and global commitment to improving access to, and developing new treatments, diagnostics, and cures for, rare diseases and disorders. </p> <ul> </ul>

tv_txt: III 113th CONGRESS 1st Session S. RES. 57 IN THE SENATE OF THE UNITED STATES February 26, 2013 Mr. Brown (for himself, Mr. Barrasso , Mr. Whitehouse , Mr. Pryor , and Mrs. Hagan ) submitted the following resolution; which was considered and agreed to RESOLUTION Designating February 28, 2013, as Rare Disease Day .

Whereas rare diseases and disorders are those that affect a small number of patients, typically less than 200,000 people in the United States; Whereas, as of the date of approval of this resolution, nearly 7,000 rare diseases affect approximately 30,000,000 people in the United States and their families; Whereas children with rare genetic diseases account for more than half of the population affected by rare diseases in the United States; Whereas many rare diseases are serious, life-threatening, and lack an effective treatment; Whereas rare diseases and conditions include epidermolysis bullosa, progeria, sickle cell anemia, Tay-Sachs, cystic fibrosis, many childhood cancers, and fibrodysplasia ossificans progressiva; 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 diseases; Whereas great strides have been made in research and treatment for rare diseases as a result of the Orphan Drug Act (Public Law 97–414; 96 Stat. 2049) and amendments made by that Act; Whereas 2013 marks the 30th anniversary of the Orphan Drug Act and therefore a time to reflect upon the successes of that Act and the challenges to be addressed in the future; Whereas both the Food and Drug Administration and the National Institutes of Health have established special offices to advocate for rare disease research and treatments; 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; Whereas the National Organization for Rare Disorders sponsors Rare Disease Day in the United States to increase public awareness of rare diseases; Whereas Rare Disease Day has become a global event occurring annually on the last day of February and was observed in more than 60 countries in 2012; 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 for years to come, providing hope and information for rare disease patients around the world; Now, therefore, be it

That the Senate— (1) designates February 28, 2013, as Rare Disease Day ; (2) recognizes the importance of improving awareness and encouraging accurate and early diagnosis of rare diseases and disorders; and (3) supports a national and global commitment to improving access to, and developing new treatments, diagnostics, and cures for, rare diseases and disorders.