[Congressional Record Volume 140, Number 148 (Wednesday, November 30, 1994)]
[Senate]
[Page S]
From the Congressional Record Online through the Government Printing Office [www.gpo.gov]


[Congressional Record: November 30, 1994]
From the Congressional Record Online via GPO Access [wais.access.gpo.gov]

 
                  CENTER FOR RARE DISEASE RESEARCH ACT

  The text of the bill (S. 1203) to establish a Center for Rare Disease 
Research in the National Institutes of Health, and for other purposes, 
as passed by the Senate on October 7, 1994, is as follows:

                                S. 1203

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Office for Rare Disease 
     Research Act of 1994''.

     SEC. 2. ESTABLISHMENT OF OFFICE FOR RARE DISEASE RESEARCH.

       Part A of title IV of the Public Health Service Act (42 
     U.S.C. 281 et seq.) is amended by adding at the end thereof 
     the following new section:

     ``SEC. 404F. OFFICE FOR RARE DISEASE RESEARCH.

       ``(a) Establishment.--There is established within the 
     Office of the Director of the National Institutes of Health 
     an office to be known as the Office for Rare Disease Research 
     (in this section referred to as the `Office'). The Office 
     shall be headed by a director, who shall be appointed by the 
     Director of the National Institutes of Health.
       ``(b) Purpose.--The purpose of the Office is to promote and 
     coordinate the conduct of research on rare diseases through a 
     strategic research plan and to establish and manage a rare 
     disease research clinical database.
       ``(c) Advisory Council.--The Secretary shall establish an 
     advisory council for the purpose of providing advice to the 
     director of the Office concerning carrying out the strategic 
     research plan and other duties under this section. Section 
     222 shall apply to such council to the same extent and in the 
     same manner as such section applies to committees or councils 
     established under such section.
       ``(d) Duties.--In carrying out subsection (b), the director 
     of the Office shall--
       ``(1) develop a comprehensive plan for the conduct and 
     support of research on rare diseases;
       ``(2) coordinate and disseminate information among the 
     institutes and the public on rare diseases;
       ``(3) support research training and encourage the 
     participation of a diversity of individuals in the conduct of 
     rare disease research;
       ``(4) identify projects or research on rare diseases that 
     should be conducted or supported by the National Institutes 
     of Health;
       ``(5) develop and maintain a central database on current 
     government sponsored clinical research projects for rare 
     diseases;
       ``(6) determine the need for registries of research 
     subjects and epidemiological studies of rare disease 
     populations; and
       ``(7) prepare biennial reports on the activities carried 
     out or to be carried out by the Office and submit such 
     reports to the Secretary and the Congress.''.

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