Partnering for Progress: Collaborating With Patient Organizations To Advance Therapy Development and Maximize Patient Benefit

11:00 AM - 12:00 PM (PDT), Tuesday, June 14, 2022

Patient advocacy organizations (PAOs) are increasingly offering sophisticated resources and expertise to advance therapeutic R&D programs, functioning as clinical research organizations in many respects. In addition to traditional resources such as communication channels with their community and understanding of the patient journey, many also have expertise related to patient-centric study design and outcome measure development; R&D funding programs; biosample and data collections; and strong connections to KOLs, CROs, and other PAOs. Partnerships with industry can be a vital component of a PAO’s strategic mission aimed at enabling new breakthroughs for their constituents. Likewise, PAO assets and expertise can be instrumental in maximizing the impact and efficiency of R&D programs. In this session, partners on both sides of PAO-industry collaborations will share their experiences with these alliances, including how to ensure alignment of interests, and factors that support a strong working relationship. 


VP Scientific Operations
Accelerated Cure Project For Multiple Sclerosis
R&D Patient Engagement Lead
Director of Research Development and Partnerships
International Fibrodysplasia Ossificans Progressiva Association
Chief Mission Officer
CMT Research Foundation