How Physicians and Researchers can partner with Advocacy Groups 1.
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Transcript of How Physicians and Researchers can partner with Advocacy Groups 1.
How Physicians and Researchers can partner with Advocacy Groups
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Orlando, Florida USA
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PPA Board of Directors
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4th of July, 1950
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Disease Advocacy GroupsAre formed in chronic or devastating diseases
Try to meet unmet need of patients
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CPAGCoalition Patient Advocacy Groups
Washington, D.C. 6
The Web
Patient Advocacy Groups offer web-based, easily accessible and medically reliable information to
patients about their condition
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Email List Serve
Patient Advocacy Groups offer a means for members to interact either through
email, list serves, blogs, or message boards
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Annual Meetings
Patient Advocacy Groups organize annual meetings for members, whereby disease experts and members can interact face to
face.
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PPA Conference
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Ask the Experts
The PPA is able to offer a virtual interface between medical
experts and their membership via our on-line “Ask the Experts”
forum
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Genetic Testing
The PPA potentiates blood banking and genetic research by gathering
relatively large numbers of patients in one repository
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My Father
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Researchers Dream Team
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PPA Being Proactive
There is a great need to organize and galvanize scientific and
medical experts to research a rare condition
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Motivation
The PPA wants to motivate experts to help the advocacy group bring the best possible information to
our patients
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Patient and Advocacy Group Leader
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