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Bill103th CongressFiled Jul 1, 1993Health
S. 1203

Office for Rare Disease Research Act of 1994

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What it doesSummary passed senate amended (Oct 8, 1994)

Office for Rare Disease Research Act of 1994 - Amends the Public Health Service Act to establish within the Office of the Director of the National Institutes of Health (NIH) an Office for Rare Disease Research (the Office) 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.

Directs the Secretary of Health and Human Services to establish an advisory council to provide advice to the Director of the Office concerning carrying out the strategic research plan and other duties under this Act.

Requires such Director to: (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 diseases research; (4) identify projects or research on rare diseases that should be conducted or supported by NIH; (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.

What just happenedDec 14, 1994

Referred to the Subcommittee on Health and the Environment.

Who’s behind it

Sen. Hatfield, Mark O. [R-OR](R-OR)Sponsor
1 cosponsor1 D
Read on Congress.gov
1cosponsors2committees13actions2related bills23subjects
  1. Dec 14, 1994CommitteeH11000

    Referred to the Subcommittee on Health and the Environment.

    Health and Environment Subcommittee
  2. Nov 29, 1994IntroReferralH11100

    Referred to the House Committee on Energy and Commerce.

    Energy and Commerce Committee
  3. Nov 29, 1994FloorH14000

    Received in the House.

  4. Nov 29, 1994Floor

    Message on Senate action sent to the House.

  5. Oct 8, 1994Floor

    Passed Senate with an amendment by Voice Vote. (consideration: CR 10/7/94 S14807-14808)

  6. Oct 8, 1994Floor17000

    Passed/agreed to in Senate: Passed Senate with an amendment by Voice Vote.(consideration: CR 10/7/94 S14807-14808)

  7. Oct 5, 1994Calendars

    Placed on Senate Legislative Calendar under General Orders. Calendar No. 714.

  8. Oct 5, 1994Committee

    Committee on Labor and Human Resources. Reported to Senate by Senator Kennedy with an amendment in the nature of a substitute. With written report No. 103-399.

    Health, Education, Labor, and Pensions Committee
  9. Oct 5, 1994Committee14000

    Committee on Labor and Human Resources. Reported to Senate by Senator Kennedy with an amendment in the nature of a substitute. With written report No. 103-399.

    Health, Education, Labor, and Pensions Committee
  10. Sep 14, 1994Committee

    Committee on Labor and Human Resources. Ordered to be reported with an amendment in the nature of a substitute favorably.

    Health, Education, Labor, and Pensions Committee
  11. Jul 1, 1993IntroReferral

    Read twice and referred to the Committee on Labor and Human Resources.

    Health, Education, Labor, and Pensions Committee
  12. Jul 1, 1993IntroReferralB00100

    Sponsor introductory remarks on measure. (CR S8489-8491)

  13. Jul 1, 1993IntroReferral10000

    Introduced in Senate

Passed Senate amendedOct 8, 199435

Office for Rare Disease Research Act of 1994 - Amends the Public Health Service Act to establish within the Office of the Director of the National Institutes of Health (NIH) an Office for Rare Disease Research (the Office) 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.

Directs the Secretary of Health and Human Services to establish an advisory council to provide advice to the Director of the Office concerning carrying out the strategic research plan and other duties under this Act.

Requires such Director to: (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 diseases research; (4) identify projects or research on rare diseases that should be conducted or supported by NIH; (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.

Introduced in SenateJul 1, 199300

Center for Rare Disease Research Act of 1993 - Amends the Public Health Service Act to establish in the Office of the Director of the National Institutes of Health a Center for Rare Disease Research in order to promote and coordinate the conduct of research on rare diseases and to establish and maintain a rare disease clinical data base. Authorizes appropriations.