The Rare Disease community and the Biotechnology industry are still reeling from the untimely death of one of its key founders and drivers, Dr. Henry Termeer.

I never had the chance to work directly with Henri, but all of us working in the rare disease space are somehow indebted to him. I met this towering figure on several occasions while attending the Orphan Drug conventions and the Biotech CEO gatherings in Boston. When we have introduced two years ago, I expressed my gratitude for the pioneering work he had done in creating a sector that many did not believe would be sustainable and where small biotech companies focused on research would thrive and change the therapeutic landscape of whole disease areas.

Henri had taken the difficult road to success through R&D, where he faced significant odds and several failures before achieving the early breakthroughs at Genzyme. When I explained what we do at Genpharm, focusing market access and on bringing approved therapies for rare disease patients in the Middle East and North Africa (MENA) region, our job looks a lot easier I said, in contrast.

Henri’s humbling reply has kept me focused and determined to make a difference in patients lives in our region. He pointed eloquently that we face different challenges such as lack of disease awareness and the difficulty in navigating pricing pressures. Nevertheless, no matter what business model we have and in which part of the value chain we operate, we should not forget that we are primarily serving the patients in our own distinct way. The core principle is to remember that as long as patients are satisfied you have a sustainable business.

He was, as in most instances, spot on. Henri has left a huge legacy behind him and an industry that brings hope to many patients suffering from a rare disease in search of treatment. Patient centricity is a hot topic in the pharma industry. Talking about it and living it consistently for more than forty years are two very distinct matters.

Henri did both until his last day.

R.I.P Henri.