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 clearing-house with respect to rare diseases.
Jonathan Tomal Rare Diseases Public Information Act - Amends the Public Health Service Act to establish: (1) the National Rare Diseases Data System for the collection, storage, analysis, retrieval, and dissemination of data from patient populations with rare health conditions; and (2) the National Rare Diseases Information Clearinghouse. Authorizes appropriations.
Introduced in House
Introduced in House
Sponsor introductory remarks on measure. (CR E1796-1797)
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health and the Environment.
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