APBD Research Foundation
and
UPenn, Million Dollar Bike Ride
- Raising Money for Rare Disease Research -
 
 
An astounding opportunity: UPenn MATCHES the dollars we raise, up to $50K
Yes, we can end up with $100,000 for APBD research via the Million Dollar Bike Ride!
If we hit our goal of raising $50,000, UPenn will:
  • Bank $100,000 for APBD research
  • Announce grant opportunities to the international scientific community
  • Evaluate the investigative proposals that come in from around the world
  • Fund proposals having the greatest promise for moving us toward a treatment or cure for APBD
  • Take on all administrative responsibilities -- gratis
 
Funding grants under the auspices of a renowned university like UPenn carries weight that just can't be overstate.
 
Here's our fundraising page 
   
Please give generously to the APBD Tour de Friends and spread the word. All contributions - small, medium, and large - are gratefully accepted.
 
Is the fundraising campaign on target?
As of the end of March, we've raised $27, 894. Let's keep going! This is for research directly related to a treatment or cure for APBD. We don't want to leave money on the table!
 
In 2016 we raised enough to get the full UPenn match. That launched TWO 2017 research investigations at $50K each. We need to act now to fill the pipeline for research in 2018! To be eligible for the matching funds,
your donation must be made by the day the bicycles set off on the Million Dollar Bike Ride - May 20, 2017.
  
 



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
May 19, 2017
Global Genes and the University of Pennsylvania Orphan Disease Center (ODC) have announced their second annual Patient Symposium for May 19, 2017. Held in conjunction with UPenn's Million Dollar Bike Ride (MDBR), which will take place the next day - May 20th, the symposium allows 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; 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 Diseases.
  • 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                                                                                 Samantha Charleston
Senior Manager, Patient Engagement                                       Assistant Director
Global Genes                                                                             Penn Medicine Orphan Disease Center
amy@globalgenes.org                                                               scharles@upenn.edu
 
(949) 248-7273 x103                                                                    (215) 573-6822
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