Collaboration is key to advance research for rare disease. Collaborations may be small, between one researcher and one advocacy organization with a individual research agreement, or more complicated, involving several organizations that address a shared need with a formal governance structure. There are also many forms of collaboration in-between involving a few to several partners. All successful collaborations involve trust, transparency and flexibility. Leaders from several organizations will discuss the structure, development and maintenance of research collaborations and how to ensure strong collaborations for advancing rare disease.
Speaker: Hans Schlecht, MD, Attending Physician of Internal Medicine and Infectious Disease, Baystate Health, and SYNGAP1 Parent Advocate
Speaker: Douglas Macdonald, PhD, Director of Research Operations and Scientific Alliances, CHDI Management / CHDI Foundation
Speaker: Michelle Davis, Executive Director, International Fibrodysplasia Ossificans Progressiva (FOP) Association
Day 2, Track 3
