 |
 |
Yes - the Parkinson Pipeline Project is a grassroots organization of people with Parkinson's disease representing the voice of the PD patient. Our activities include: Promotes policies that accelerate the evaluation, approval of safe, effective, and timely new treatments for PD by providing the unique patient perspective to trial sponsors and government regulatory agencies. Increases patient awareness of and participation in clinical trials. Advocates for the rights of clinical trial participants. Tracks the progress of new therapies and diagnostics as they move through sponsors’ pipelines, and maintains a database to report findings of laboratory studies, animal testing, and human clinical trial stages. Thanks mainly to the efforts of Pipeline director, Perry Cohen, there are now 3 Parkinson's patients serving as Patient Consultants on FDA advisory committees. SEE: http://pdpipeline.org/yy_advocacy/fda_patientinvolvement.htm For more information about other activities of the Pipeline Project does - see the website: www.pdpipeline.org If you are interested in joining this project, please contact me off the list. Linda Herman [log in to unmask] -- mackenzie <[log in to unmask]> wrote: do any of you folks out there who are active in an activist way know whether there is anywhere, any-how that someone or ones with PD have any input into the research process itself? I know there are folks working the funding end and the legislative end and the public awareness end, but actual input from the horse's mouth regarding the research on which the horse's life depends - is it happening anywhere? I know PDF is in the process of putting together a patient advisory council - anyone else? any advisory roles at NIH for real, live, actual PWP? __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn http://mail.yahoo.com ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn