how physicians and researchers can partner with advocacy groups 1
TRANSCRIPT
How Physicians and Researchers can partner with Advocacy Groups
1
Orlando, Florida USA
2
PPA Board of Directors
3
4th of July, 1950
4
Disease Advocacy GroupsAre formed in chronic or devastating diseases
Try to meet unmet need of patients
5
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
7
Email List Serve
Patient Advocacy Groups offer a means for members to interact either through
email, list serves, blogs, or message boards
8
Annual Meetings
Patient Advocacy Groups organize annual meetings for members, whereby disease experts and members can interact face to
face.
9
PPA Conference
10
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
Genetic Testing
The PPA potentiates blood banking and genetic research by gathering
relatively large numbers of patients in one repository
12
My Father
13
Researchers Dream Team
14
PPA Being Proactive
There is a great need to organize and galvanize scientific and
medical experts to research a rare condition
15
Motivation
The PPA wants to motivate experts to help the advocacy group bring the best possible information to
our patients
16
Patient and Advocacy Group Leader
17