A Business Model to Tackle the Challenge of Drug Development for Rare Diseases
Odylia’s Origin Story: From an idea to a revolution in drug development
Odylia was founded by Scott Dorfman, a successful entrepreneur and the father of two children with Usher syndrome, a rare genetic disease that affects vision and hearing, and Luk Vandenberghe, PhD, an innovator in the field of gene therapy. As a parent and business leader, Scott quickly recognized that the model used to support drug development is often based more on potential profits than on patient benefit, making many drugs to treat rare diseases unattractive candidates for commercial developers. The result is that many promising early-stage drugs never advance to clinical stage research. Scott and Luk saw a solution in utilizing an innovative nonprofit model to support rare disease drug development. Joining with researcher Eric Pierce and with initial funding from Massachusetts Eye & Ear (MEEI) and Usher 2020 Foundation, they founded Odylia with the sole mission to address the challenges keeping promising drugs from getting to patients who need them.
The Odylia nonprofit model starts by identifying promising early-stage investigational drugs through a global network of leaders in academic research and patient group-led efforts. From there, the Odylia team builds a collaborative network of partners and a strategic plan for each program that is fueled by support from a broad community of stakeholders including philanthropic organizations and families as well as industry supporters. To build the right team to advance each program, Odylia breaks down competitive barriers, bringing together a coalition of patient advocacy groups, researchers, industry partners, and funders who play pivotal roles in moving each development program forward.
Odylia has two gene therapies currently in development within the Odylia Pipeline. Through Odylia’s Brydge Solutions program, we also accelerate rare disease therapeutic efforts outside of the Odylia Pipeline. Follow the links to learn more.
Governance and Finance
Odylia Therapeutics, Inc. is an IRS 501(c)3 charity. We are rated by Candid and Charity Navigator. Our IRS 990 Forms can be found at the links below and through Guidestar: https://www.guidestar.
When partnering with academic groups or similarly-operating entities, Odylia can only fund up to 10% on indirect or administrative costs to ensure limited funds go to the most critical needs. Wherever possible we hope organizations will consider a rate of 0%.
For questions or additional information, please email: info@odylia.org