Seth Rotberg | Sr. Manager, Patient Advocacy and Engagement
Prilenia

Seth Rotberg is a nationally recognized patient leader, healthcare industry professional, and TEDx speaker. After his mother's 17-year battle with Huntington's Disease (HD), Seth made it his mission to improve the patient experience in healthcare. During the past 16 years, he's had a successful track record working with patient advocacy organizations, patient influencers, pharma/biotech, and healthcare recruitment companies. Team-oriented approach with expertise in community engagement, project management, and public speaking; particularly within the rare disease space. Seth currently resides in Chicago where he works as the Senior Manager of Patient Advocacy and Engagement at Prilenia.

Appearances:

Pre-Conference Day - World Orphan Drug Congress USA 2025 @ 13:20

Fireside chat: The value of patient experience data to advance rare disease research

Seth Rotberg, Sr. Manager, Patient Advocacy and Engagement, Prilenia

Richie Kahn, Co-Founder & COO, Canary Advisors

Day 1- World Orphan Drug Congress USA 2025 @ 14:50

Panel: Patient advocates driving rare drug development

In this panel, patient advocates, caregivers, and community leaders will discuss the special sauce. This panel will leave you with actionable, tangible take-aways to improve therapeutic development, strengthen pipelines, build patient-driven company cultures, impact patients in need of treatment, and efficiently meet business goals through authentic and powerful patient partnerships.

This stand out panel will be an open dialogue with ideas to integrate the patient community into biotech process, and how new advocacy organizations can galvanize as a community to de-risk the orphan drug development process… IF we take this beyond the panel and into the process. Today.

Moderator: Mike Porath, Founder And Chief Executive Officer, The mighty

Luke Rosen, Founder, Rescue 7: Firefighters for Patients