[Congressional Bills 103th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2652 Introduced in House (IH)]

103d CONGRESS
  1st Session
                                H. R. 2652

To amend the Public Health Service Act to provide for the establishment 
   through the National Institutes of Health of a data system and an 
        information clearinghouse with respect to rare diseases.


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                    IN THE HOUSE OF REPRESENTATIVES

                             July 15, 1993

  Mr. Roemer introduced the following bill; which was referred to the 
                    Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
To amend the Public Health Service Act to provide for the establishment 
   through the National Institutes of Health of a data system and an 
        information clearinghouse with respect to rare diseases.

    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 ``Jonathan Tomal Rare Diseases Public 
Information Act''.

SEC. 2. ESTABLISHMENT OF DATA SYSTEM AND INFORMATION CLEARINGHOUSE WITH 
              RESPECT TO RARE DISEASES.

    Part A of title IV of the Public Health Service Act (42 U.S.C. 281 
et seq.), as amended by section 207 of Public Law 103-43, is amended by 
adding at the end the following section:

  ``data system and information clearinghouse regarding rare diseases

    ``Sec. 404E. (a) Data System.--The Director of NIH, acting through 
the appropriate national research institutes, shall establish the 
National Rare Diseases Data System for the collection, storage, 
analysis, retrieval, and dissemination of data derived from patient 
populations with rare diseases, disorders, or other health conditions, 
including where possible, data involving general populations for the 
purpose of detection of individuals with a risk of developing such 
diseases, disorders, or conditions.
    ``(b) Information Clearinghouse.--The Director of NIH, acting 
through the appropriate national research institutes, shall establish 
the National Rare Diseases Information Clearinghouse to facilitate and 
enhance, through the effective dissemination of information, knowledge 
and understanding of rare diseases, disorders, and other health 
conditions by health professionals, patients, and the public.
    ``(c) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated $3,000,000 
for fiscal year 1994, and such sums as may be necessary for each of the 
fiscal years 1995 and 1996.''.

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