We Can’t Do it Alone: Structure and Governance for Research Collaborations

August 3, 2021

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 discussed the structure, development and maintenance of research collaborations and how to ensure strong collaborations for advancing rare disease.

Hans Schlecht, M.D.
Attending Physician of Internal Medicine and Infectious Disease, Baystate Health
SYNGAP1 Parent Advocate

Douglas Macdonald, Ph.D.
Director of Research Operations and Scientific Alliances
CHDI Management / CHDI Foundation

Michelle Davis
Executive Director
International Fibrodysplasia Ossificans Progressiva (FOP) Association

This was a session from the 2020 RARE Patient Advocacy Summit.

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