2017 Rare Patient Advocacy Symposium

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Sharing Patient Voices Throughout the Drug Research and Development Process

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

May 19, 2017

$50 Registration Fee

Global Genes and the University of Pennsylvania Orphan Disease Center (ODC) have announced it’s second annual Patient Symposium, in conjunction with UPenn’s Million Dollar Bike Ride (MDBR) event taking place on May 19, 2017.  The Symposium has been developed for patient advocates to learn, connect and be inspired.  This year’s two-track program will focus on rare disease research, drug development, and the patient’s role in this process. Attendees do not need to be affiliated with the MDBR and all rare disease patients and advocates are welcome to attend.  

Topics include:

  • The Drug Research and Development Roadmap:  How Patients Share Their Voices.
  • What Should Patients Expect when Funding Basic Research for Rare Disease.
  • Developing Strong Partnerships Between Patient Groups and Industry.
  • No Longer Just the Research Subject:  New Roles for Patients in Clinical Trials
  • Raising Funds to Support Rare Disease Research at All Stages:  Bike Rides, Bake Sales, Research Grants, and More

 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 fourth year, brings more 500 cyclists and volunteers to Penn’s campus to ride either 12, 33, or 73 miles starting in the city, and ranging across the Greater Philadelphia region. In three years, the MDBR’s 25+ teams have raised more than $3.5 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