Matt Bolz-Johnson

  • ERN & Healthcare Advisor

Matt Johnson

Matt Bolz-Johnson joined EURORDIS in 2014 as Healthcare and Research Director, later becoming ERN & Healthcare Advisor.

At EURORDIS Matt has lead on advocating 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.

Prior to joining EURORDIS, Matt worked for 14 years in the National Health Service in England, in both hospital and commissioning trusts, 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 ultra-rare diseases and highly specialised healthcare services. He developed national clinical networks to improve equitable access, cost efficiency and clinical effectiveness, and to promote innovation for rare cancers, genetic conditions, rare paediatric conditions, transplantations and highly specialised mental health conditions.

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 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 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 continuing working to support healthcare for rare diseases across Europe. He is a native English speaker and is learning German.

Telephone: +49 1729 388 387
Email: matt.bolz-johnson@eurordis.org

 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases