Frequently Asked Questions


What is the Orphan Disease Center?

The Orphan Disease Center is a non-profit organization that seeks to accelerate therapeutic development for rare diseases in which there are few resources. Although we are an academic-based group that exists in the infrastructure of the Perelman School of Medicine at the University of Pennsylvania, we are 100% philanthropically funded and operate differently than most academic groups. We work closely with patient groups and foundations, pharma and biotech, and the academic community to identify new treatments, as well as develop strategies to overcome the gaps and obstacles that currently exist in the clinical progression of new therapeutics.


When was the ODC founded?

The ODC was founded in 2011 by a generous philanthropic contribution from UPenn Alumnus, George Weiss. In 2015, Dr. Jim Wilson was appointed Director of the Center.


Does the ODC provide care or treatment to patients?

The ODC does not see or treat patients, rather we support and fund research in pursuit of therapeutic developments for rare diseases.


What type of research does ODC fund?

ODC funds research that focuses on thereapeutic development and platform technologies that can be leveraged across various rare diseases.

How many grants/grant programs does ODC fund each year?

The ODC offers over 50 grant opportunities in 30+ disease areas annually to researchers across the globe, as well as within the Penn and CHOP community. Since 2011, our grant programs have funded $17.2 million in rare disease research. You can view a listing of our past awardees and their projects on our Awarded Grants page.


How can I get involved?

Penn and CHOP faculty can visit our Membership page and complete the Membership Survey. If you are not a Penn or CHOP faculty member but wish to get involved, you can visit the Membership page and join our ODC email list!


Can my organization/business/foundation partner with the ODC?

To learn more about our past partnerships, visit our Jump Start page, our Corporate Sponsorships page, and our Million Dollar Bike Ride Website.


What is the Million Dollar Bike Ride?

The Million Dollar Bike Ride brings over 750+ 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 funded over $10 million for rare disease research in partnership with the ODC. We ensure that 100% of the funds raised goes towards these pilot grants, with no overhead taken out. For updates and information, you can visit our Million Dollar Bike Ride Website.