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

2. Orlando, Florida USA 2

3. PPA Board of Directors 3

4. 4 th of July, 1950 4

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

6. CPAG Coalition Patient Advocacy Groups Washington, D.C. 6

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

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

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

10. PPA Conference 10

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 11

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

13. My Father 13

14. Researchers Dream Team 14

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

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

17. Patient and Advocacy Group Leader 17