At Ovid Therapeutics, the patients’ input is essential to how they develop medications and how they do business. Leading that mindset is Luke Rosen, Vice President of Patient Engagement & Government Affairs for the company.
Rosen, the father of a child with a ultra-rare condition that currently has no treatment, knows first hand the importance of developing a partnership between the patient groups and the biotech companies so that both parties can achieve their goals.
Rosen also knows that as head of Ovid’s Patient Engagement program, each patient group has their own unique challenges.
“One of the things that we’ve realized is that every single community needs to be engaged with in a different way. I mean we you know we work with communities that have foundations that are very well funded and huge and operating like a you know slickly oiled machine and then we also work with foundations that are a year or two years old that are getting their money by having lemonade stands,” noted Rosen.
Rosen added that by engaging the patients in the companies drug development is good for business. “it’s important to have close engagement and close inclusion with the patient’s families and the caregivers because we want to be efficient, said Rosen, adding, “When we’re developing protocols for clinical trials, it’s important to have patients, caregivers, family, someone from the foundation with us to talk talking about what the needs of the families are… because if we don’t have that insight woven into every step of our drug development process then we’re going to have to redo it and that takes a lot of time and a lot of money.”
Some of the orphan drugs that Ovid Therapeutics have in development are for rare diseases such as Angelman syndrome, Fragile X syndrome, CDKL5 deficiency disorder, and Dravet syndrome.