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Through the dedication of a mother,
Heather Long, who
lost her child to an undiagnosed disease. A bill will be
introduced to create an Undiagnosed Disease Registry.
These are some key facts
about the proposed bill. To learn more about the bill visit
the links to the right.
- Allowing physicians
to search similar conditions and collaborate
with other physicians handling similar cases
- Better enable
cross-disease research to cross reference
the undiagnosed diseases to common and rare
disease.
- Better describe the
types and prevalence of undiagnosed disease
cases
- Make necessary data
available to elucidate appropriate factors
- Better outline key
demographic factors
- Better understand the
length of time for a diagnosis to be
rendered.
- Improve access to
programs such as the Undiagnosed Disease
Program
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- Expansion of such
Undiagnosed Disease Program, throughout
the United States
- Establishment by
other entities of undiagnosed disease
programs of like scope and nature to the
Undiagnosed Disease Program through the
NIH.
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Information available to appropriate health care
professionals, patients, and other qualified individuals
and organizations.
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No
identifiable information with be available.
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