On May 19, 2017, Susan will co-host the program “Sharing Patient Voices Throughout the Drug Research and Development Process” with Global Genes and the University of Pennsylvania Orphan Disease Center. The second annual Rare Patient Advocacy Symposium is being held in conjunction with Penn Medicine’s Million Dollar Bike Ride. This year’s event will focus on rare disease research, drug development, and the patient’s role in this process. All rare disease patients and advocates are welcome. Topics include how patients share their voices in drug research and development, what patients should expect when funding basic research, the development of strong partnerships between patient groups and industry, new roles for patients in clinical trials, and fundraising for rare disease research.
For more information, go to https://globalgenes.org/2017-rare-patient-advocacy-symposium; or contact Global Genes at firstname.lastname@example.org, or 949-248-7273 (ext 103); or contact Penn Medicine Orphan Disease Center at email@example.com, or 215-573-6822.