Bob Stevens

Having two sons diagnosed with a rare disease(MPSII) changes your perspective and priorities in life.

Having spent over 20 years in construction, many of which were at Board level, I decided to pursue a career in the Charity sector. At first I became a Trustee and eventually I progressed to become a Managing Director and Group CEO of various patient organisations, supporting those living with rare diseases and complex needs. I wanted to bring together my family experiences of a "Rare life lived" and commercial attributes in order to improve the lives of those most marginalised in society whilst, at the same time, helping to create a more sustainable financial  future for patient organisations both in the UK and globally.

As well as being Group CEO I am proud to serve as Vice Chair of the LSD Collaborative, Co-Chair of the worldwide International MPS Network and work as a patient representative for MPS in various global charitable access programs that provide a possible lifeline to treatments in selected areas of the world.

These are not job roles, but a way of life!