[Congressional Bills 103th Congress]
[From the U.S. Government Printing Office]
[S. 1203 Reported in Senate (RS)]
Calendar No. 714
103d CONGRESS
2d Session
S. 1203
_______________________________________________________________________
A BILL
To establish a Center for Rare Disease Research in the National
Institutes of Health, and for other purposes.
_______________________________________________________________________
October 5 (legislative day, September 12), 1994
Reported with an amendment
Calendar No. 714
103d CONGRESS
2d Session
S. 1203
[Report No. 103-399]
To establish a Center for Rare Disease Research in the National
Institutes of Health, and for other purposes.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
July 1 (legislative day, June 30), 1993
Mr. Hatfield (for himself and Mr. DeConcini) introduced the following
bill; which was read twice and referred to the Committee on Labor and
Human Resources
October 5 (legislative day, September 12), 1994
Reported by Mr. Kennedy, with an amendment
[Strike out all after the enacting clause and insert the part printed
in italic]
_______________________________________________________________________
A BILL
To establish a Center for Rare Disease Research in the National
Institutes of Health, and for other purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
-S-E-C-T-I-O-N -1-. -S-H-O-R-T -T-I-T-L-E-.
-T-h-i-s -A-c-t -m-a-y -b-e -c-i-t-e-d -a-s -t-h-e -`-`-C-e-n-t-e-r
-f-o-r -R-a-r-e -D-i-s-e-a-s-e -R-e-s-e-a-r-c-h -A-c-t -o-f
-1-9-9-3-'-'-.
-S-E-C-. -2-. -E-S-T-A-B-L-I-S-H-M-E-N-T -O-F -C-E-N-T-E-R -F-O-R
-R-A-R-E -D-I-S-E-A-S-E -R-E-S-E-A-R-C-H-.
-P-a-r-t -E -o-f -t-i-t-l-e -I-V -o-f -t-h-e -P-u-b-l-i-c
-H-e-a-l-t-h -S-e-r-v-i-c-e -A-c-t -(-4-2 -U-.-S-.-C-. -2-8-7 -e-t
-s-e-q-.-) -i-s -a-m-e-n-d-e-d -b-y -a-d-d-i-n-g -a-t -t-h-e -e-n-d
-t-h-e-r-e-o-f -t-h-e -f-o-l-l-o-w-i-n-g -n-e-w -s-u-b-p-a-r-t-:
-`-`-S-u-b-p-a-r-t -4----C-e-n-t-e-r -f-o-r -R-a-r-e -D-i-s-e-a-s-e
-R-e-s-e-a-r-c-h
-`-`-S-E-C-. -4-8-6-A-. -E-S-T-A-B-L-I-S-H-M-E-N-T-.
-`-`-(-a-) -I-n -G-e-n-e-r-a-l-.----T-h-e-r-e -s-h-a-l-l -b-e
-e-s-t-a-b-l-i-s-h-e-d -i-n -t-h-e -O-f-f-i-c-e -o-f -t-h-e
-D-i-r-e-c-t-o-r -o-f -t-h-e -N-a-t-i-o-n-a-l -I-n-s-t-i-t-u-t-e-s -o-f
-H-e-a-l-t-h -a -C-e-n-t-e-r -f-o-r -R-a-r-e -D-i-s-e-a-s-e
-R-e-s-e-a-r-c-h -(-h-e-r-e-a-f-t-e-r -r-e-f-e-r-r-e-d -t-o -i-n
-t-h-i-s -s-e-c-t-i-o-n -a-s -t-h-e -`-C-e-n-t-e-r-'-)-. -T-h-e
-D-i-r-e-c-t-o-r -o-f -t-h-e -N-a-t-i-o-n-a-l -I-n-s-t-i-t-u-t-e-s -o-f
-H-e-a-l-t-h -s-h-a-l-l -a-p-p-o-i-n-t -a-n -i-n-d-i-v-i-d-u-a-l
-w-i-t-h -e-x-p-e-r-t-i-s-e -i-n -r-a-r-e -d-i-s-e-a-s-e-s -t-o
-s-e-r-v-e -a-s -t-h-e -D-i-r-e-c-t-o-r -o-f -t-h-e -C-e-n-t-e-r
-(-h-e-r-e-a-f-t-e-r -r-e-f-e-r-r-e-d -t-o -i-n -t-h-i-s -s-e-c-t-i-o-n
-a-s -t-h-e -`-D-i-r-e-c-t-o-r-'-)-.
-`-`-(-b-) -P-u-r-p-o-s-e-.----T-h-e -g-e-n-e-r-a-l -p-u-r-p-o-s-e
-o-f -t-h-e -C-e-n-t-e-r -i-s -t-o -p-r-o-m-o-t-e -a-n-d
-c-o-o-r-d-i-n-a-t-e -t-h-e -c-o-n-d-u-c-t -o-f -r-e-s-e-a-r-c-h -o-n
-r-a-r-e -d-i-s-e-a-s-e-s -a-n-d -t-o -e-s-t-a-b-l-i-s-h -a-n-d
-m-a-n-a-g-e -a -r-a-r-e -d-i-s-e-a-s-e -r-e-s-e-a-r-c-h
-c-l-i-n-i-c-a-l -d-a-t-a-b-a-s-e-. -I-n -c-a-r-r-y-i-n-g -o-u-t -t-h-e
-p-u-r-p-o-s-e -o-f -t-h-e -C-e-n-t-e-r-, -t-h-e -D-i-r-e-c-t-o-r
-s-h-a-l-l---
-`-`-(-1-) -c-o-n-d-u-c-t -a-n-d -s-u-p-p-o-r-t
-r-e-s-e-a-r-c-h -a-n-d -r-e-s-e-a-r-c-h -t-r-a-i-n-i-n-g-;
-`-`-(-2-) -a-w-a-r-d -g-r-a-n-t-s -a-n-d
-c-o-n-t-r-a-c-t-s-;
-`-`-(-3-) -i-d-e-n-t-i-f-y -p-r-o-j-e-c-t-s -o-f
-r-e-s-e-a-r-c-h -o-n -r-a-r-e -d-i-s-e-a-s-e-s -t-h-a-t
-s-h-o-u-l-d -b-e -c-o-n-d-u-c-t-e-d -o-r -s-u-p-p-o-r-t-e-d
-b-y -t-h-e -N-a-t-i-o-n-a-l -I-n-s-t-i-t-u-t-e-s -o-f
-H-e-a-l-t-h-;
-`-`-(-4-) -d-i-s-s-e-m-i-n-a-t-e -i-n-f-o-r-m-a-t-i-o-n
-a-m-o-n-g -t-h-e -i-n-s-t-i-t-u-t-e-s -a-n-d -t-h-e
-p-u-b-l-i-c -o-n -r-a-r-e -d-i-s-e-a-s-e-s-;
-`-`-(-5-) -d-e-v-e-l-o-p -a-n-d -m-a-i-n-t-a-i-n -a
-c-e-n-t-r-a-l -d-a-t-a-b-a-s-e -o-n -c-u-r-r-e-n-t
-c-l-i-n-i-c-a-l -r-e-s-e-a-r-c-h -p-r-o-j-e-c-t-s -f-o-r
-r-a-r-e -d-i-s-e-a-s-e-s-;
-`-`-(-6-) -e-n-c-o-u-r-a-g-e -t-h-e
-p-a-r-t-i-c-i-p-a-t-i-o-n -o-f -a -d-i-v-e-r-s-i-t-y -o-f
-i-n-d-i-v-i-d-u-a-l-s -i-n -t-h-e -c-o-n-d-u-c-t -o-f -r-a-r-e
-d-i-s-e-a-s-e -r-e-s-e-a-r-c-h-; -a-n-d
-`-`-(-7-) -c-o-o-r-d-i-n-a-t-e -t-h-e -c-o-n-d-u-c-t -o-f
-r-a-r-e -d-i-s-e-a-s-e -r-e-s-e-a-r-c-h -a-m-o-n-g -a-l-l
-i-n-s-t-i-t-u-t-e-s -a-n-d -o-t-h-e-r -F-e-d-e-r-a-l
-a-g-e-n-c-i-e-s-.
-`-`-(-c-) -S-t-r-a-t-e-g-i-c -R-e-s-e-a-r-c-h -P-l-a-n-.----T-h-e
-D-i-r-e-c-t-o-r -s-h-a-l-l -d-e-v-e-l-o-p -a
-c-o-m-p-r-e-h-e-n-s-i-v-e -p-l-a-n -f-o-r -t-h-e -c-o-n-d-u-c-t -a-n-d
-s-u-p-p-o-r-t -o-f -r-e-s-e-a-r-c-h -o-n -r-a-r-e -d-i-s-e-a-s-e-s-.
-T-h-e -p-l-a-n -s-h-a-l-l---
-`-`-(-1-) -i-d-e-n-t-i-f-y -c-u-r-r-e-n-t -r-e-s-e-a-r-c-h
-a-c-t-i-v-i-t-i-e-s -c-o-n-d-u-c-t-e-d -o-r -s-u-p-p-o-r-t-e-d
-b-y -t-h-e -F-e-d-e-r-a-l -G-o-v-e-r-n-m-e-n-t -a-n-d
-p-r-i-v-a-t-e -e-n-t-i-t-i-e-s-, -o-p-p-o-r-t-u-n-i-t-i-e-s
-a-n-d -n-e-e-d-s -f-o-r -a-d-d-i-t-i-o-n-a-l -r-e-s-e-a-r-c-h
-a-n-d -p-r-i-o-r-i-t-i-e-s -f-o-r -s-u-c-h -r-e-s-e-a-r-c-h-;
-`-`-(-2-) -m-a-k-e -r-e-c-o-m-m-e-n-d-a-t-i-o-n-s -f-o-r
-t-h-e -i-m-p-r-o-v-e-d -c-o-o-r-d-i-n-a-t-i-o-n -o-f
-r-e-s-e-a-r-c-h -c-o-n-d-u-c-t-e-d -b-y -t-h-e -F-e-d-e-r-a-l
-G-o-v-e-r-n-m-e-n-t -a-m-o-n-g -i-t-s -a-g-e-n-c-i-e-s -a-n-d
-p-r-i-v-a-t-e -e-n-t-i-t-i-e-s-;
-`-`-(-3-) -g-i-v-e -e-m-p-h-a-s-i-s -t-o -a-r-e-a-s
-w-i-t-h -r-e-s-p-e-c-t -t-o -w-h-i-c-h -l-i-t-t-l-e
-r-e-s-e-a-r-c-h -h-a-s -b-e-e-n -c-o-n-d-u-c-t-e-d-;
-`-`-(-4-) -e-x-a-m-i-n-e -t-h-e -e-x-t-e-n-t -o-f
-r-e-s-e-a-r-c-h -o-n -g-e-n-e -t-h-e-r-a-p-y -a-n-d
-g-e-n-e-t-i-c -t-r-a-n-s-f-e-r-s -a-n-d -d-e-v-e-l-o-p -a
-p-l-a-n -t-o -e-n-h-a-n-c-e -t-h-e -e-x-t-e-n-t -o-f
-r-e-s-e-a-r-c-h -o-n -g-e-n-e -t-h-e-r-a-p-y-,
-p-a-r-t-i-c-u-l-a-r-l-y -f-o-r -r-a-r-e -d-i-s-e-a-s-e-s-;
-`-`-(-5-) -d-e-t-e-r-m-i-n-e -t-h-e -n-e-e-d -f-o-r
-r-e-g-i-s-t-r-i-e-s -o-f -r-e-s-e-a-r-c-h -s-u-b-j-e-c-t-s
-a-n-d -e-p-i-d-e-m-i-o-l-o-g-i-c-a-l -s-t-u-d-i-e-s -o-f
-r-a-r-e -d-i-s-e-a-s-e -p-o-p-u-l-a-t-i-o-n-s-;
-`-`-(-6-) -i-d-e-n-t-i-f-y -t-h-e -o-b-s-t-a-c-l-e-s -t-o
-t-h-e -d-e-v-e-l-o-p-m-e-n-t -o-f -t-r-e-a-t-m-e-n-t-s -f-o-r
-r-a-r-e -d-i-s-e-a-s-e-s-; -a-n-d
-`-`-(-7-) -e-x-a-m-i-n-e -t-r-a-i-n-i-n-g -a-n-d
-e-d-u-c-a-t-i-o-n -r-e-q-u-i-r-e-m-e-n-t-s -f-o-r
-p-h-y-s-i-c-i-a-n-s -t-r-e-a-t-i-n-g -r-a-r-e
-d-i-s-e-a-s-e-s-.
-`-`-(-d-) -C-o-o-r-d-i-n-a-t-i-n-g -C-o-m-m-i-t-t-e-e-.---
-`-`-(-1-) -E-s-t-a-b-l-i-s-h-m-e-n-t-.----T-h-e
-S-e-c-r-e-t-a-r-y -s-h-a-l-l -e-s-t-a-b-l-i-s-h -a
-C-o-o-r-d-i-n-a-t-i-n-g -C-o-m-m-i-t-t-e-e -o-n -R-a-r-e
-D-i-s-e-a-s-e -R-e-s-e-a-r-c-h -(-h-e-r-e-a-f-t-e-r
-r-e-f-e-r-r-e-d -t-o -a-s -t-h-e -`-C-o-o-r-d-i-n-a-t-i-n-g
-C-o-m-m-i-t-t-e-e-'-) -t-o -b-e -c-o-m-p-o-s-e-d -o-f---
-`-`-(-A-) -t-h-e -D-i-r-e-c-t-o-r-s -o-f -t-h-e
-a-g-e-n-c-i-e-s -a-n-d -i-n-s-t-i-t-u-t-e-s -o-f
-t-h-e -N-a-t-i-o-n-a-l -I-n-s-t-i-t-u-t-e-s -o-f
-H-e-a-l-t-h-;
-`-`-(-B-) -t-h-e -D-i-r-e-c-t-o-r -o-f -t-h-e
-C-e-n-t-e-r -w-h-o -s-h-a-l-l -s-e-r-v-e -a-s -t-h-e
-c-h-a-i-r-p-e-r-s-o-n -o-f -t-h-e
-C-o-o-r-d-i-n-a-t-i-n-g -C-o-m-m-i-t-t-e-e-;
-`-`-(-C-) -t-h-e -A-d-m-i-n-i-s-t-r-a-t-o-r -o-f
-t-h-e -V-e-t-e-r-a-n-s -A-d-m-i-n-i-s-t-r-a-t-i-o-n-;
-`-`-(-D-) -t-h-e -S-e-c-r-e-t-a-r-y -o-f
-D-e-f-e-n-s-e-;
-`-`-(-E-) -t-h-e -A-d-m-i-n-i-s-t-r-a-t-o-r -o-f
-t-h-e -F-o-o-d -a-n-d -D-r-u-g
-A-d-m-i-n-i-s-t-r-a-t-i-o-n-;
-`-`-(-F-) -t-h-e -A-d-m-i-n-i-s-t-r-a-t-o-r -o-f
-t-h-e -H-e-a-l-t-h -C-a-r-e -F-i-n-a-n-c-i-n-g
-A-d-m-i-n-i-s-t-r-a-t-i-o-n-; -a-n-d
-`-`-(-G-) -t-h-e -D-i-r-e-c-t-o-r -o-f -t-h-e
-C-e-n-t-e-r -f-o-r -D-i-s-e-a-s-e -C-o-n-t-r-o-l
-a-n-d -P-r-e-v-e-n-t-i-o-n-.
-`-`-(-2-) -D-u-t-i-e-s-.----T-h-e -C-o-o-r-d-i-n-a-t-i-n-g
-C-o-m-m-i-t-t-e-e -s-h-a-l-l---
-`-`-(-A-) -i-d-e-n-t-i-f-y -n-e-e-d-s -f-o-r
-r-e-s-e-a-r-c-h -o-n -r-a-r-e -d-i-s-e-a-s-e-s-;
-`-`-(-B-) -e-s-t-i-m-a-t-e -t-h-e -f-u-n-d-s
-n-e-e-d-e-d -d-u-r-i-n-g -e-a-c-h -f-i-s-c-a-l
-y-e-a-r -t-o -a-d-e-q-u-a-t-e-l-y -f-u-n-d
-r-e-s-e-a-r-c-h -o-n -r-a-r-e -d-i-s-e-a-s-e-s-;
-`-`-(-C-) -e-n-c-o-u-r-a-g-e -t-h-e
-a-g-e-n-c-i-e-s -a-n-d -I-n-s-t-i-t-u-t-e-s -o-f
-t-h-e -N-a-t-i-o-n-a-l -I-n-s-t-i-t-u-t-e-s -o-f
-H-e-a-l-t-h -t-o -s-u-p-p-o-r-t -a-n-d -c-o-n-d-u-c-t
-r-e-s-e-a-r-c-h -o-n -r-a-r-e -d-i-s-e-a-s-e-s-;
-`-`-(-D-) -c-o-o-r-d-i-n-a-t-e -r-e-s-e-a-r-c-h
-o-n -r-a-r-e -d-i-s-e-a-s-e-s -i-n -t-h-e
-F-e-d-e-r-a-l -G-o-v-e-r-n-m-e-n-t -i-n -a-n
-e-f-f-o-r-t -t-o -a-v-o-i-d -d-u-p-l-i-c-a-t-i-o-n
-a-n-d -e-n-h-a-n-c-e -r-e-s-e-a-r-c-h -i-n -a-r-e-a-s
-t-r-a-d-i-t-i-o-n-a-l-l-y -n-o-t -f-u-n-d-e-d-;
-`-`-(-E-) -e-n-s-u-r-e -t-h-a-t -a
-d-i-v-e-r-s-i-t-y -o-f -i-n-d-i-v-i-d-u-a-l-s -a-r-e
-a-b-l-e -t-o -p-a-r-t-i-c-i-p-a-t-e -a-s
-r-e-s-e-a-r-c-h -s-u-b-j-e-c-t-s -i-n -p-r-o-j-e-c-t-s
-c-o-n-d-u-c-t-i-n-g -r-e-s-e-a-r-c-h -o-n -r-a-r-e
-d-i-s-e-a-s-e-s-; -a-n-d
-`-`-(-F-) -b-i-e-n-n-i-a-l-l-y -p-r-e-p-a-r-e
-a-n-d -s-u-b-m-i-t -t-o -t-h-e -S-e-c-r-e-t-a-r-y
-a-n-d -t-h-e -C-o-n-g-r-e-s-s -a -r-e-p-o-r-t
-c-o-n-c-e-r-n-i-n-g -t-h-e -a-c-t-i-v-i-t-i-e-s -o-f
-t-h-e -C-o-o-r-d-i-n-a-t-i-n-g -C-o-m-m-i-t-t-e-e-.
-`-`-(-e-) -N-a-t-i-o-n-a-l -A-d-v-i-s-o-r-y -B-o-a-r-d -o-n
-R-a-r-e -D-i-s-e-a-s-e -R-e-s-e-a-r-c-h-.---
-`-`-(-1-) -E-s-t-a-b-l-i-s-h-m-e-n-t-.----T-h-e
-D-i-r-e-c-t-o-r -s-h-a-l-l -e-s-t-a-b-l-i-s-h -a-n
-a-d-v-i-s-o-r-y -b-o-a-r-d -t-o -b-e -k-n-o-w-n -a-s -t-h-e
-A-d-v-i-s-o-r-y -B-o-a-r-d -o-n -R-a-r-e -D-i-s-e-a-s-e
-R-e-s-e-a-r-c-h -(-h-e-r-e-a-f-t-e-r -r-e-f-e-r-r-e-d -t-o
-i-n -t-h-i-s -s-e-c-t-i-o-n -a-s -t-h-e -`-B-o-a-r-d-'-)-.
-`-`-(-2-) -D-u-t-i-e-s-.----T-h-e -B-o-a-r-d -s-h-a-l-l
-r-e-v-i-e-w -a-n-d -a-s-s-e-s-s -F-e-d-e-r-a-l
-r-e-s-e-a-r-c-h -n-e-e-d-s-, -p-r-i-o-r-i-t-i-e-s-,
-a-c-t-i-v-i-t-i-e-s-, -f-u-n-d-i-n-g -a-n-d -f-i-n-d-i-n-g-s
-r-e-g-a-r-d-i-n-g -r-a-r-e -d-i-s-e-a-s-e-s -a-n-d -s-h-a-l-l
-a-d-v-i-s-e -t-h-e -D-i-r-e-c-t-o-r -o-n -t-h-e
-d-e-v-e-l-o-p-m-e-n-t -a-n-d -i-m-p-l-e-m-e-n-t-a-t-i-o-n -o-f
-t-h-e -r-e-s-e-a-r-c-h -p-l-a-n -r-e-q-u-i-r-e-d -u-n-d-e-r
-s-u-b-s-e-c-t-i-o-n -(-c-)-.
-`-`-(-3-) -C-o-m-p-o-s-i-t-i-o-n-.----T-h-e -B-o-a-r-d
-s-h-a-l-l -b-e -c-o-m-p-o-s-e-d -o-f -1-5
-i-n-d-i-v-i-d-u-a-l-s -t-o -b-e -a-p-p-o-i-n-t-e-d -b-y -t-h-e
-D-i-r-e-c-t-o-r -o-f -t-h-e -N-a-t-i-o-n-a-l
-I-n-s-t-i-t-u-t-e-s -o-f -H-e-a-l-t-h-, -o-f -w-h-i-c-h
-e-i-g-h-t -i-n-d-i-v-i-d-u-a-l-s -s-h-a-l-l -b-e
-r-e-p-r-e-s-e-n-t-a-t-i-v-e-s -o-f -h-e-a-l-t-h -a-n-d
-s-c-i-e-n-t-i-f-i-c -d-i-s-c-i-p-l-i-n-e-s -w-i-t-h
-r-e-s-p-e-c-t -t-o -r-a-r-e -d-i-s-e-a-s-e-s -a-n-d -s-e-v-e-n
-i-n-d-i-v-i-d-u-a-l-s -s-h-a-l-l -b-e -r-e-p-r-e-s-e-n-t-i-n-g
-t-h-e -i-n-t-e-r-e-s-t -o-f -i-n-d-i-v-i-d-u-a-l-s -w-i-t-h
-r-a-r-e -d-i-s-e-a-s-e-s-. -S-u-c-h -i-n-d-i-v-i-d-u-a-l-s
-s-h-a-l-l -n-o-t -b-e -o-f-f-i-c-e-r-s -o-r -e-m-p-l-o-y-e-e-s
-o-f -t-h-e -F-e-d-e-r-a-l -G-o-v-e-r-n-m-e-n-t-.
-`-`-(-4-) -E-x -o-f-f-i-c-i-o -m-e-m-b-e-r-s-.----T-h-e
-m-e-m-b-e-r-s -o-f -t-h-e -C-o-o-r-d-i-n-a-t-i-n-g
-C-o-m-m-i-t-t-e-e -s-h-a-l-l -s-e-r-v-e -a-s -e-x
-o-f-f-i-c-i-o -m-e-m-b-e-r-s -o-f -t-h-e -B-o-a-r-d-.
-`-`-(-5-) -C-h-a-i-r-p-e-r-s-o-n-.----T-h-e -m-e-m-b-e-r-s
-o-f -t-h-e -B-o-a-r-d -s-h-a-l-l -a-n-n-u-a-l-l-y -s-e-l-e-c-t
-a-n -i-n-d-i-v-i-d-u-a-l -t-o -s-e-r-v-e -a-s -t-h-e
-c-h-a-i-r-p-e-r-s-o-n -o-f -t-h-e -B-o-a-r-d-.
-`-`-(-f-) -N-a-t-i-o-n-a-l -R-a-r-e -D-i-s-e-a-s-e
-C-l-i-n-i-c-a-l -a-n-d -I-n-f-o-r-m-a-t-i-o-n-a-l
-D-a-t-a-b-a-s-e-.---
-`-`-(-1-) -E-s-t-a-b-l-i-s-h-m-e-n-t-.----T-h-e
-D-i-r-e-c-t-o-r -s-h-a-l-l -e-s-t-a-b-l-i-s-h -a
-d-a-t-a-b-a-s-e -t-h-a-t---
-`-`-(-A-) -i-d-e-n-t-i-f-i-e-s -t-h-e
-e-x-t-e-n-t-, -l-o-c-a-t-i-o-n-, -a-n-d -s-p-o-n-s-o-r
-o-f -c-u-r-r-e-n-t -r-e-s-e-a-r-c-h -c-o-n-d-u-c-t-e-d
-o-n -r-a-r-e -d-i-s-e-a-s-e-s-;
-`-`-(-B-) -c-o-n-n-e-c-t-s -r-e-s-e-a-r-c-h-e-r-s
-o-f -r-a-r-e -d-i-s-e-a-s-e-s -w-i-t-h
-p-a-t-i-e-n-t-s -n-e-e-d-e-d -a-s -s-u-b-j-e-c-t-s
-f-o-r -c-l-i-n-i-c-a-l -t-r-i-a-l-s-;
-`-`-(-C-) -p-r-o-v-i-d-e-s -p-h-y-s-i-c-i-a-n-s
-a-n-d -i-n-d-i-v-i-d-u-a-l-s -w-i-t-h
-i-n-f-o-r-m-a-t-i-o-n -c-o-n-c-e-r-n-i-n-g -t-h-e
-l-o-c-a-t-i-o-n -a-n-d -s-p-o-n-s-o-r-s -o-f
-c-l-i-n-i-c-a-l -t-r-i-a-l-s -o-n -r-a-r-e
-d-i-s-e-a-s-e-s-; -a-n-d
-`-`-(-D-) -c-o-n-n-e-c-t-s -p-a-t-i-e-n-t-s
-w-i-t-h -s-u-p-p-o-r-t -g-r-o-u-p-s -i-n -r-a-r-e
-d-i-s-e-a-s-e-s-.
-`-`-(-2-) -A-v-a-i-l-a-b-i-l-i-t-y-.----T-h-e
-D-i-r-e-c-t-o-r -s-h-a-l-l -e-n-s-u-r-e -t-h-a-t
-i-n-f-o-r-m-a-t-i-o-n -i-n -t-h-e -d-a-t-a-b-a-s-e -i-s
-a-v-a-i-l-a-b-l-e -t-o -t-h-e -g-e-n-e-r-a-l -p-u-b-l-i-c-.
-`-`-(-g-) -A-u-t-h-o-r-i-z-a-t-i-o-n -o-f
-A-p-p-r-o-p-r-i-a-t-i-o-n-s-.----T-h-e-r-e -a-r-e -a-u-t-h-o-r-i-z-e-d
-t-o -b-e -a-p-p-r-o-p-r-i-a-t-e-d -t-o -c-a-r-r-y -o-u-t -t-h-i-s
-s-e-c-t-i-o-n-, -$-1-0-,-0-0-0-,-0-0-0 -f-o-r -e-a-c-h -o-f -t-h-e
-f-i-s-c-a-l -y-e-a-r-s -1-9-9-4 -t-h-r-o-u-g-h -1-9-9-6-.
-`-`-(-h-) -D-e-f-i-n-i-t-i-o-n-.----A-s -u-s-e-d -i-n -t-h-i-s
-s-e-c-t-i-o-n-, -t-h-e -t-e-r-m -`-r-a-r-e -d-i-s-e-a-s-e-' -m-e-a-n-s
-a-n-y -d-i-s-e-a-s-e -o-r -c-o-n-d-i-t-i-o-n -t-h-a-t -a-f-f-e-c-t-s
-f-e-w-e-r -t-h-a-n -2-0-0-,-0-0-0 -i-n-d-i-v-i-d-u-a-l-s -i-n -t-h-e
-U-n-i-t-e-d -S-t-a-t-e-s-.-'-'-.
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.''.