ensuring greater cooperation between the entities within this
Commonwealth and Federal agencies regarding the research,
diagnosis and treatment of rare diseases. For purposes of
this paragraph, Federal agencies may include, but are not
limited to, the National Institutes of Health and the Food
and Drug Administration. The coordination shall require, when
appropriate:
(i) Disseminating the outcomes of the advisory
council's research, identified best practices and policy
recommendations.
(ii) Utilizing common research collection and
dissemination procedures.
(b) Duties.--The duties of the advisory council are to:
(1) Research and determine the most appropriate method
to collect rare disease data, and information concerning
individuals with rare diseases, as the advisory council deems
necessary and appropriate to conduct comprehensive surveys of
rare diseases diagnosed in this Commonwealth, subject to all
applicable privacy laws and protections.
(2) Ensure that the duties described in subsection (a)
(1) are carried out in a manner that is coordinated and
interoperable with other similar research being conducted at
the Federal and State level.
(3) Research and identify priorities relating to the
quality and cost effectiveness of and access to treatment and
other services provided to individuals with rare diseases in
this Commonwealth and develop policy recommendations on those
issues.
(4) Identify best practices in other states and at the
national level for rare disease management, monitoring and
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