Grants to collect and analyze data on rare diseases and conditions in minority populations

Section 1707(b) of the Public Health Service Act (42 U.S.C. 300u–6(b)) is amended by adding at the end the following: (11) In coordination with the Director of the Centers for Disease Control and Prevention, award grants to public and private nonprofit entities to— (A) collect, analyze, and report data on rare diseases and conditions in minority populations, including on epidemiological data with respect to incidence of such diseases and conditions in such populations; (B) conduct outreach and engagement activities with the minority populations impacted by such rare diseases and conditions by— (i) improving health literacy with respect to rare diseases and conditions; (ii) disseminating information on health and community services related to rare diseases and conditions; and (iii) providing information regarding the maintenance of rare diseases and conditions. (12) Submit to Congress, on a biannual basis (beginning not later than 2 years after the date of the enactment of the HEARD Act), a report describing the activities carried out pursuant to paragraph (11)..