Matt Bolz-Johnson joined EURORDIS in 2014 as Healthcare and Research Director, later becoming Mental Wellbeing Lead & Healthcare Advisor.
At EURORDIS Matt has led advocacy for the rare disease community by shaping the development and delivery of European Reference Networks (ERNs). Specifically, Matt has ensured a patient centred approach is at the heart of ERNs, through developing European Patient Advocacy Groups formally linked to each ERN. Matt also leads the advocacy work on mental health and the development of a new EURORDIS Mental Wellbeing Partnership Network.
Prior to joining EURORDIS, Matt worked for 14 years in the National Health Service in England, working as a hospital manager in a mental health trust and as a health commissioner, where he was responsible for strategy development, clinical turnaround, quality assessment and contracting across the full spectrum of healthcare. He was a National Commissioner for highly specialised mental health services and ultra-rare diseases.
Recently, Matt worked for Rare Diseases International as a Programme Director leading the development of the Concept Model & Operational Framework for a new informal WHO hosted network – Global Network for Rare Diseases.
Since arriving at EURORDIS Matt has been working on two Joint Actions for Rare Diseases and leads on European Reference Networks. He developed the Partnership for Assessment of Clinical Excellence in the European Reference Networks (PACE-ERN) consortium and coordinated the technical proposal for the Assessment Manual & Technical Toolbox for ERN applications, which was the blueprint for all 24 ERNs. Matt was also a co-lead for EURORDIS Rare Impact II initiative, leading the research on the processes and criteria of selection of Centres of Expertise for ATMPs.
Matt holds a Master of Art in Fine Art, at The Slade School of Fine Art, University College London and worked as a production designer before changing career in 1999, when he started working in an acute mental health unit in London. He has relocated to Köln, where he is continually working to support healthcare for rare diseases across Europe. He is a native English speaker and is learning German.
Telephone: +49 1729 388 387