"There is an incredibly unique vantage point that nonprofits and advocacy organizations can serve," Danielle Kerkovich, PhD, director of research development and partnerships for the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), told ScienceBoard.net. "We do have resources that are incredibly valuable to de-risking some of these programs so that pharmaceutical companies can ultimately be successful."
Kerkovich was a panelist for the June 14 panel at BIO 2022 titled, "Partnering for Progress: Collaborating With Patient Organizations To Advance Therapy Development and Maximize Patient Benefit."
IFOPA maintains the world's only patient registry for patients with Fibrodysplasia Ossificans Progressiva (FOP), a rare genetic disorder that causes soft tissues to transform permanently into bone. Currently, six pharma companies have access to the real-world data in the patient registry.
"It's also important that we provide this go-between between drug developers and academic institutions that are working on advancing programs and the patients, to make sure that the two sides are considering one another's perspectives," said Michelle Davis, executive director of IFOPA. "One of the activities that we participate in is making the [patient] community aware about the drug development process and about the process of clinical studies and trials."
Watch the video below to learn more.