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Representatives a preliminary report on the work of the advisory
council. The report shall be made available to the public. The
report shall include a summary of the accomplishments of the
advisory council since its formation and the status of its work
in preparation of the report required under subsection (b).
(b) Report.--Within two years of the effective date of this
section, the advisory council shall deliver to the Public Health
and Welfare HEALTH AND HUMAN SERVICES Committee of the Senate
and the Health Committee of the House of Representatives a
comprehensive report. The report shall be made available to the
public. The report shall include the following:
(1) The incidence and prevalence of rare diseases within
this Commonwealth.
(2) The needs of the rare disease community within this
Commonwealth and the actions necessary and feasible to
address those needs.
(c) Biennial reports.--The advisory council shall report
biennially to the department, the Public Health and Welfare
HEALTH AND HUMAN SERVICES Committee of the Senate and the Health
Committee of the House of Representatives on the activities of
the advisory council and its findings and recommendations on
issues relating to the management, monitoring and surveillance,
education, detection, diagnosis, information and care regarding
rare diseases in this Commonwealth, including the quality and
cost effectiveness of care, access to treatment and other
relevant services for individuals affected by rare diseases.
Section 7. Expiration.
This act shall expire June 30, 2025.
Section 8. Effective date.
This act shall take effect immediately.
20170HB0239PN2005 - 7 -
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