Matt Bolz- Johnson

MA (Honours)
BA (Honours)
SoS Researcher in Rare Diseases


Matt trained in Fine Art at the Slade School of Fine Art and started his professional career as production designer working in theatre, prior working in the healthcare sector.


He has worked in both hospital and commissioning trusts, leading strategic development, clinical turnaround, contacting and quality improvement across the full spectrum of healthcare – primary care, acute services through to national highly specialized healthcare services. Matt is experienced in undertaking evidence based reviews and targeting national clinical policy securing access for patients to optimal therapies. He specializes in the development of clinical networks for rare diseases both nationally and across Europe.


Matt works as the Healthcare and Research Director at EURORDIS, leading on rare disease advocacy activities in shaping the development and delivery of European Reference Networks and leading Research Infrastructures. He has lead and work on European Commission projects and initiatives, specifically leading the development of technical proposal for the Assessment Manual & Technical Toolbox for European Reference Network applications; Joint Actions for Rare Cancers, Joint Action for Rare Diseases.


Matt now works for Spoonful of Sugar, based in Köln, Germany leading the German office.

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