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Uniting Physicians and Advocacy Groups: Breaking Down Barriers for the Benefit of Patients

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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Uniting Physicians and Advocacy Groups: Breaking Down Barriers for the Benefit of Patients

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  1. Crossing Barriers How Physicians and Researchers can partner with Advocacy Groups

  2. Orlando, Florida USA

  3. PPA Board of Directors

  4. 4th of July, 1950

  5. Disease Advocacy Groups • Are formed in chronic or devastating diseases • Try to meet unmet need of patients

  6. CPAGCoalition Patient Advocacy Groups Washington, D.C.

  7. The Web Patient Advocacy Groups offer web-based, easily accessible and medically reliable information to patients about their condition

  8. Email List Serve Patient Advocacy Groups offer a means for members to interact either through email, list serves, blogs, or message boards

  9. Annual Meetings Patient Advocacy Groups organize annual meetings for members, whereby disease experts and members can interact face to face.

  10. PPA Conference

  11. 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

  12. Genetic Testing The PPA potentiates blood banking and genetic research by gathering relatively large numbers of patients in one repository

  13. My Father

  14. Researchers Dream Team

  15. PPA Being Proactive There is a great need to organize and galvanize scientific and medical experts to research a rare condition

  16. Motivation The PPA wants to motivate experts to help the advocacy group bring the best possible information to our patients

  17. Patient and Advocacy Group Leader

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