2018 Rare Patient Advocacy Symposium

Sharing Patient Voices Throughout the Drug Research and Development Process

A Partnership of Global Genes and the Penn Medicine Orphan Disease Center

Please Save the Date for the

RARE Patient Advocacy Symposium May 19, 2018!

Philadelphia, PA

 

                     

 

Global Genes and the University of Pennsylvania Orphan Disease Center (ODC) have announced it’s third annual Patient Symposium, in conjunction with UPenn’s Million Dollar Bike Ride (MDBR) event taking place on May 19, 2018.  The Symposium has been developed for patient advocates to learn, connect and be inspired.  Attendees do not need to be affiliated with the MDBR and all rare patient, advocates and stakeholders are welcome to attend!  

 For more information, please contact:

Amy Grover
Senior Manager, Patient Engagement
Global Genes
amyg@globalgenes.org
949-248-7273 x103
Samantha Charleston
Assistant Director
        Penn Medicine Orphan Disease Center
scharle@upenn.edu
215-573-6822

 

 

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About Million Dollar Bike Ride

The Million Dollar Bike Ride, now in its fifth year, brings more than 500 cyclists and volunteers to Penn’s campus to ride either 13, 34, or 72 miles starting in the city and ranging across the Greater Philadelphia region. In four years, the MDBR’s 25+ teams have raised more than $6.4 million to fund research grants on the diseases they represent. The ODC ensures that 100% of the funds raised goes towards these pilot grants, with no overhead taken out.

All funds raised by Disease Teams through pledges are used by the ODC to expand the scope and depth of the pilot grant program. Following the event, a Request for Application (RFA) will be broadly distributed to the international scientific community requesting pilot grant applications to study diseases for which designated money has been raised. The ODC is securing philanthropic and corporate donations that will be used to match dollar‐for‐dollar money raised by the cycling participants. www.milliondollarbikeride.org