[Congressional Bills 103th Congress]
[From the U.S. Government Publishing 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.''.