[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[H. Con. Res. 147 Introduced in House (IH)]






108th CONGRESS
  1st Session
H. CON. RES. 147

   Commemorating the 20th Anniversary of the Orphan Drug Act and the 
               National Organization for Rare Disorders.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             April 10, 2003

Mr. Foley (for himself, Mr. Waxman, Mr. Shimkus, Mr. Brown of Ohio, Mr. 
 Kolbe, Ms. Slaughter, Mr. Herger, Mr. McNulty, Mr. Pallone, Mr. Green 
 of Texas, Mr. Allen, Mrs. Capps, Mr. LaHood, and Mr. Engel) submitted 
    the following concurrent resolution; which was referred to the 
                    Committee on Energy and Commerce

_______________________________________________________________________

                         CONCURRENT RESOLUTION


 
   Commemorating the 20th Anniversary of the Orphan Drug Act and the 
               National Organization for Rare Disorders.

Whereas Congress passed, and President Ronald Regan signed into law on January 
        4, 1983, the Orphan Drug Act;
Whereas there are many diseases and conditions, such as Huntington's disease, 
        myoclonus, ALS (Lou Gehrig's disease), Tourette syndrome and muscular 
        dystrophy, that affect such small numbers of individuals--populations 
        under 200,000--residing in the United States that the diseases and 
        conditions are considered rare;
Whereas there are 6,000 known rare diseases and conditions, affecting 
        approximately 25,000,000 Americans;
Whereas these rare diseases and conditions are sometimes referred to as 
        ``orphan'' diseases and conditions, and drugs (including biological 
        products) to treat them are sometimes referred to as ``orphan drugs'';
Whereas, prior to 1983, because so few individuals were affected by any one 
        orphan disease or condition, a pharmaceutical company that developed an 
        orphan drug may have reasonably expected the drug to generate relatively 
        small sales in comparison to the cost of developing the drug and, 
        therefore, to incur a financial loss;
Whereas the object of the Orphan Drug Act was to stimulate the development of 
        orphan drugs,
Whereas the Orphan Drug Act is one of the most successful Federal laws enacted 
        in the last 20 years;
Whereas, prior to 1983, less than 40 therapies existed to treat orphan diseases 
        and conditions as compared today to the more than 238 drugs, foods, and 
        devices that now exist to treat an estimated 11,000,000 patients in the 
        United States;
Whereas 85 percent of orphan drugs are being used to treat serious and/or life-
        threatening diseases, 31 percent treat rare forms of cancer, and 
        approximately 50 percent are approved for pediatric uses;
Whereas the National Organization of Rare Disorders, established in 1983, is a 
        federation of voluntary health organizations dedicated to helping people 
        with orphan diseases and conditions and assisting the organizations that 
        serve them; and
Whereas the National Organization of Rare Disorders is committed to the 
        identification, treatment and cure of orphan diseases and conditions 
        through programs of education, advocacy, research and service: Now, 
        therefore, be it
    Resolved by the House of Representatives (the Senate concurring), 
That the Congress celebrates the 20th Anniversary of the Orphan Drug 
Act and the National Organization of Rare Disorders, and recognizes the 
great contributions the Orphan Drug Act has made to the rare disease 
community.
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