Bob Stevens is the Group CEO for the MPS Society and Rare Disease Research Partners, a patient organisation with a one of a kind patient logistics support and research subsidiary that although based in the UK has a global impact. Since 1982 the MPS Society has been providing support to the rare community including 1-1 support both in person or remotely according to the needs of the patient. Other services include benefits advice, psychological support and working with all parts of the healthcare ecosystem to ensure patients gain access to treatments and therapies that can help improve their lives.
Bob also has various other roles both in the UK and globally including LSD Global Chair, LSD Collaborative Vice Chair, Fabry International Network Board Member, PMCPA Appeal Board Member , International MPS Network Member. He also is a motivational speaker for the pharmaceutical and “Rare Disease” community.
Having been on a “Rare Journey” for nearly 25 years and as a dad of two rare disease boys I have experienced many of the challenges and opportunities in the rare and ultra rare eco system. I do not have a job but a way of life dedicated to ensuring global collaboration and supporting our communities to “Live a rare life better”