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Explore how physicians and researchers can collaborate with advocacy groups to meet the unmet needs of patients. Learn about disease advocacy groups, web-based resources, annual meetings, expert forums, genetic testing, and the importance of proactive research initiatives.
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Crossing Barriers How Physicians and Researchers can partner with Advocacy Groups
Disease Advocacy Groups • Are formed in chronic or devastating diseases • Try to meet unmet need of patients
CPAGCoalition Patient Advocacy Groups Washington, D.C.
The Web Patient Advocacy Groups offer web-based, easily accessible and medically reliable information to patients about their condition
Email List Serve Patient Advocacy Groups offer a means for members to interact either through email, list serves, blogs, or message boards
Annual Meetings Patient Advocacy Groups organize annual meetings for members, whereby disease experts and members can interact face to face.
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
Genetic Testing The PPA potentiates blood banking and genetic research by gathering relatively large numbers of patients in one repository
PPA Being Proactive There is a great need to organize and galvanize scientific and medical experts to research a rare condition
Motivation The PPA wants to motivate experts to help the advocacy group bring the best possible information to our patients