Purposes:
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To promote education and
awareness of bleeding disorders
-
To facilitate support of
individuals with bleeding disorders and their families
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To promote early diagnosis,
appropriate treatment, and proper self-care
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To promote research for the
treatment and cure of bleeding disorders
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Why do we need this group?
It is estimated
that there are millions people in the United States with
undiagnosed bleeding disorders. Even mild bleeding disorders
can cause serious consequences—even
death—if not properly
treated. Education and outreach to these individuals will
facilitate proper diagnosis and treatment.
Advocacy
efforts--recently and in decades past--have:
-
saved
lives
-
prevented
avoidable and disabling complications from
bleeding disorders
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drastically decreased bloodborne infections
-
prevented
unnecessary and risky medical procedures
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provided
essential health insurance coverage
When people with
rare medical problems remain silent, their needs will be
overlooked.
People with bleeding
disorders recently educated elected officials about their needs,
and legislation was proposed and/or passed.
Illinois Hemophilia Care Act (for all bleeding disorders)
Pennsylvania Hemophilia Standards of Care Act |
We are currently seeking chapter members.
Click
here to join.
Membership is currently free, but donations are
encouraged. Your tax-deductible
donation will help pay
for programs and materials. If you are able to make a
donation, click:
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Privacy
policy: Although the CNY Bleeding Disorders Association is
not subject to laws pertaining to confidentiality of medical
information and identity (such as HIPAA), we strive to observe
reasonable precautions to ensure your personal information is
not disclosed. Generally, information about you will not be
released without your permission. In email messages sent to
multiple persons, recipient email addresses will be blinded upon
request. We do not sell or share your information with other
parties. A hit counter is installed on this site to measure web
site traffic, but your identity and location are not revealed to
the webmaster. |
