Sheela Upadhyaya | Rare Disease Consultant
Rarely Ordinary

Sheela Upadhyaya Founder, Rarely Ordinary | Rare Disease, Health Policy and Life Sciences Expert Sheela Upadhyaya is the founder of Rarely Ordinary and a highly respected rare disease, health policy and life sciences expert. With more than 20 years’ experience across the NHS, NICE, government and industry, she brings a rare combination of deep subject-matter expertise, system insight and a proven ability to turn complex challenges into clear, practical action. Sheela works at the point where evidence, policy and decision-making meet. She understands how policy choices shape access, care and outcomes—and why conventional approaches often fail to reflect the realities of rare conditions. Trusted for her insight, integrity and tenacity, she brings patients, healthcare leaders, policymakers and industry together to navigate uncertainty, strengthen health systems and develop credible, deliverable solutions that work in practice. Through Rarely Ordinary, Sheela helps organisations connect evidence, ideas and people to accelerate progress, expand choice and advance equity. Her approach is grounded in a simple belief: complex challenges do not need louder thinking; they need clearer, more purposeful action. Her ambition is a future in which people living with rare conditions are visible, valued and fully supported by health systems—through solutions shaped with empathy, delivered in partnership and built to last. “Change happens when rare insight becomes shared action.”