Seth Ginsberg

About Seth

For more than 25 years, Seth has worked alongside people living with chronic and complex disease to turn lived experience into clarity, confidence, and real-world impact. His work sits at the intersection of patients, science, technology, and policy, with a deep focus on digital health advocacy that actually works in people’s lives.

Seth co-founded CreakyJoints in October 1999 and now serve as President of the Global Healthy Living Foundation (GHLF). Together, these platforms form one of the most active and trusted patient ecosystems in global health, reaching millions of patients each month across rheumatology, dermatology, gastroenterology, neurology, respiratory disease, rare immunology, rare disease, and beyond.

Seth regularly collaborates with the FDA, CDC, NIH, and regulatory bodies worldwide, including PBAC in Australia, as well as senior leaders across life sciences, health systems, and technology. Many of today’s patient engagement “best practices” grew out of programs my teams pioneered long before they became standard.

Key initiatives Seth has helped build include CreakyJoints, PatientSpot, PainSpot, and global patient support programs serving immunocompromised communities. Every resource created is free to patients and families, supported through research partnerships, grants, and mission-aligned funding.

Seth hosts and chairs forums, advisory programs, and convenings around the world, including the J-Forum in Tokyo and large-scale digital and in-person advocacy summits in the U.S. and abroad. He speaks often about trust, behavior change, digital ethics, AI, and the future of patient-centered health systems.

At the core, this work stays personal. Seth is a patient, diagnosed with spondyloarthropathy at age 14, who believes progress happens faster when humility and ambition share the same room.