about us
Michael Wilbur is an independent consultant in patient advocacy and corporate affairs based in Paris.
Former roles include:
- Chief Operating Officer at EURORDIS-Rare Diseases Europe (6 years)
- Head of Planning and Delivery –NHS England / NHS Improvement (10 years)
- Associate Director of Research and Online Marketing-CEB now Gartner (6 years)
Michael is a regular contributor to Rare Revolution Magazine's Rare Revolution Insider.
our approach
1. lead with patients: centre everything we do around the patient experience
2. empower patient groups: partner with trained, accountable organisations to build legitimacy
3. make it engaging: use storytelling to bring reports and insights to life
4. think as an ecosystem: bring patients, clinicians, advocates, and industry together to co-create solutions
5. build bridges, not silos: connect with existing initiatives to amplify impact
6. focus on the client: focus on project goals to ensure our work drives meaningful results
select writing samples
Houston we have a problem: NASA-inspired strategies for rare disease: Rare Revolution Insider June, 2025
Navigating Change: Membership Survey Report: EURORDIS-Rare Diseases Europe, April 2025
A EURORDIS report on the challenges faced by displaced Ukrainians affected by a rare disease – Poland: EURORDIS-Rare Diseases Europe, April 2022
Urgent Support and Aid Needed for Ukrainian Patients with Rare Diseases and their Families: European Medical Journal, March 2022