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Advocacy
Groups
non-profit groups involved in the Blood Cancer Coalition
and other good works. |
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Advocacy
Programs (CARRA, FDA Patient
consultants programs, NCI Director's Liaison, IRB, etc.) |
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Clinical
Trial Design and Participation Consulting with
Patients, the FDA, Drug Sponsors, the NCI, and community
physicians. Establishing credibility through hard work and financial independence. |
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Overcoming
obstacles to participation in clinical trials
Patient
Perspectives |
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Combining
Forces
the importance of working
together to fight for common goals |
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Conflict
of Interest
and how it can creates biases, erode trust, and sometimes
compromise our ability to make progress against the disease |
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Famous
People with Lymphoma
helping to
raise awareness |
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Health
issues on Congress.org
Alerts | Soap
Box | Letters
| Votes
| Bills
| Regulations
| Orgs |
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Lymphoma
Statistics
when you need facts to make the case |
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National
Biospecimen Network |
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Opportunities
and Challenges
in FDA Evaluations of New Drugs | Patient
Perspectives
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Patient
Perspectives
an archive of issues and commentary |
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State
Coverage for Health Care Costs for Clinical Trials
How Does Your State Measure Up? |
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The
PRG Plan
Progress Review Group Plan
developed
by esteemed experts and patient advocates |
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Institute of
Medicine report
‘Quality Chasm’
PDF
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Understanding Clinical Trial Design: PDF
A Tutorial for Research Advocates
Authored by Jane Perlmutter, PhD
for Research Advocacy Network’s Advocate Institute
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What
is advocacy?
wpas-rights.org
Identifying Your Biases
All people develop attitudes, preferences and
biases. However, in order to be an effective advocate, you
must be able to recognize your own attitudes, preferences, and
biases. If you don't your attitudes are likely to interfere
with your judgment. You could take positions which reflect
your biases, rather than the choices of the people for whom you
advocate. You may interpret the actions of others cynically,
or naively, and thereby lose your ability to work effectively for
the interests of others. |
