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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