Karen Cheng

I bring a unique perspective to Euro-NMD as a patient advocate, combining my lived experience with a rare neuromuscular disease with my background as a physician and international healthcare executive. My career has spanned clinical practice, medical affairs, clinical development, patient engagement, medical education, and product and project management across Asia, North America, and Europe. I trained as an oral surgeon in the United Kingdom, completing my surgical training at Leeds University Teaching Hospitals and the Royal Liverpool University Hospital before gaining Membership of the Royal College of Surgeons of England. Following international clinical and humanitarian work in Thailand and Sri Lanka, I moved into healthcare leadership before my own life changed dramatically with a diagnosis of polymyositis in 2006. After prolonged hospitalization and rehabilitation, I completed an MBA and transitioned into global leadership roles within the medical device and pharmaceutical industries, where I worked extensively in rare immunology and neuromuscular diseases. Nearly two decades later, my diagnosis was refined at the National Institutes of Health to immune-mediated necrotizing myopathy (IMNM) with anti-SRP autoantibodies. This journey has strengthened my commitment to improving diagnosis, advancing research, expanding access to innovative therapies, and ensuring that patients are meaningful partners in research and healthcare decision-making. I have served on the board of the International Myositis Society (iMyoS), contributed to the steering committee of the Global Conference on Myositis (GCOM), and continue to support numerous international organisations, including EULAR PARE, IMACS, MIHRA, EBMT, and The Myositis Association, as well as serving as a patient research partner across multiple research initiatives. My goal is to bridge the perspectives of patients, clinicians, researchers, industry, and policymakers. By combining lived experience with clinical and industry expertise, I hope to help shape more patient-centred research, improve collaboration across the rare disease community, and ultimately contribute to better outcomes for people living with neuromuscular diseases.