‘‘(6) identify the obstacles to the development
of treatments for rare diseases; and
‘‘(7) examine training and education require-
ments for physicians treating rare diseases.
‘‘(d) COORDINATING COMMITTEE.—
‘‘(1) ESTABLISHMENT.—The Secretary shall es-
tablish a Coordinating Committee on Rare Disease
Research (hereafter referred to as the ‘Coordinating
Committee’) to be composed of—
‘‘(A) the Directors of the agencies and in-
stitutes of the National Institutes of Health;
‘‘(B) the Director of the Center who shall
serve as the chairperson of the Coordinating
Committee;
‘‘(C) the Administrator of the Veterans
Administration;
‘‘(D) the Secretary of Defense;
‘‘(E) the Administrator of the Food and
Drug Administration;
‘‘(F) the Administrator of the Health Care
Financing Administration; and
‘‘(G) the Director of the Center for Dis-
ease Control and Prevention.
‘‘(2) DUTIES.—The Coordinating Committee
shall—
‘‘(A) identify needs for research on rare
diseases;
‘‘(B) estimate the funds needed during
each fiscal year to adequately fund research on
rare diseases;
‘‘(C) encourage the agencies and Institutes
of the National Institutes of Health to support
and conduct research on rare diseases;
‘‘(D) coordinate research on rare diseases
in the Federal Government in an effort to avoid
duplication and enhance research in areas tradi-
tionally not funded;
‘‘(E) ensure that a diversity of individuals
are able to participate as research subjects in
projects conducting research on rare diseases;
and
‘‘(F) biennially prepare and submit to the
Secretary and the Congress a report concerning
the activities of the Coordinating Committee.
‘‘(e) NATIONAL ADVISORY BOARD ON RARE DISEASE
RESEARCH.—
‘‘(1) ESTABLISHMENT.—The Director shall es-
tablish an advisory board to be known as the Advi-
sory Board on Rare Disease Research (hereafter re-
ferred to in this section as the ‘Board’).
‘‘(2) DUTIES.—The Board shall review and as-
sess Federal research needs, priorities, activities,
funding and findings regarding rare diseases and
shall advise the Director on the development and im-
plementation of the research plan required under
subsection (c).
‘‘(3) COMPOSITION.—The Board shall be com-
posed of 15 individuals to be appointed by the Direc-
tor of the National Institutes of Health, of which
eight individuals shall be representatives of health
and scientific disciplines with respect to rare dis-
eases and seven individuals shall be representing the
interest of individuals with rare diseases. Such indi-
viduals shall not be officers or employees of the
Federal Government.
‘‘(4) EX OFFICIO MEMBERS.—The members of
the Coordinating Committee shall serve as ex officio
members of the Board.
‘‘(5) CHAIRPERSON.—The members of the
Board shall annually select an individual to serve as
the chairperson of the Board.
‘‘(f) NATIONAL RARE DISEASE CLINICAL AND IN-
FORMATIONAL DATABASE.—
‘‘(1) ESTABLISHMENT.—The Director shall es-
tablish a database that—
‘‘(A) identifies the extent, location, and
sponsor of current research conducted on rare
diseases;
‘‘(B) connects researchers of rare diseases
with patients needed as subjects for clinical
trials;
‘‘(C) provides physicians and individuals
with information concerning the location and
sponsors of clinical trials on rare diseases; and
‘‘(D) 
connects 
patients 
with 
support
groups in rare diseases.
‘‘(2) AVAILABILITY.—The Director shall ensure
that information in the database is available to the
general public.
‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—There
are authorized to be appropriated to carry out this section,
$10,000,000 for each of the fiscal years 1994 through
1996.
‘‘(h) DEFINITION.—As used in this section, the term
‘rare disease’ means any disease or condition that affects
fewer than 200,000 individuals in the United States.’’.
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