Clive Phillips | Founder and CEO
Making the Most of Now

Clive Phillips is the founder of Making the Most of Now, an advocacy initiative inspired both by his rare condition, Multifocal Motor Neuropathy (MMN), and by his belief that resilience and joy can be found even in the face of uncertainty. With a professional background in management and operations, Clive brings a strategic eye to health advocacy, working to bridge the gap between patients, healthcare providers, and industry. Living with MMN himself, Clive speaks candidly about the daily realities of rare disease — from the frustrations and limitations to the unexpected moments of humour, perspective, and possibility. He is known for turning personal challenge into collective inspiration, most recently through the Tour de MMN, a journey that captured attention for its message of awareness, connection, and hope. Clive collaborates widely with regulators, pharmaceutical companies, and patient organisations, bringing authenticity and insight to conversations that often risk becoming abstract or overly technical. His focus is simple but powerful: ensuring that patient voices are not only heard but acted upon in shaping research, treatments, and community support. At the World Orphan Drug Congress, he shares his story in the Patient Voice Spotlight: Tour de MMN and the Power of Now, offering a rare perspective on what it truly means to make the most of now.