About the organization
Basic details : Passionate about enabling people with severe diseases to live the life they choose
We have a shared ambition to transform the lives of people living with severe diseases. We focus on neurology and immunology disorders – putting patients at the centre of our world.Inspired by patients, driven by science. Everything we do starts with one simple question: “How can we create more value for people living with severe diseases?".
Mission : Passionate about enabling people with severe diseases to live the life they choose
We have a shared ambition to transform the lives of people living with severe diseases. We focus on neurology and immunology disorders – putting patients at the centre of our world.
Vision : Inspired by patients, driven by science. Everything we do starts with one simple question: “How can we create more value for people living with severe diseases?".
Badges earned
Website
Address
Allée de la Recherche, 60 1070 Brussels, Belgium
People
Jodie Allen
Associate Director / Customer Experience Innovation / Beyond-the-Pill / Healthcare
Brussels, Belgium
Initiatives
Country rules of patient engagement
PE Stakeholder Expectation Matrix
Co-creation of the Patient Engagement "Meta-Framework"
Patient engagement in the regulatory submission phase
Patient engagement in co-creation of Patient Information Leaflets and other patient facing material.
Patient Engagement How-To Module for the creation of Plain Language Summaries for scientific publications
Health Innovation Coalition – Health Crisis
Paradigm Work Package 2 - Assessment of practices and processes
Resources
Industry Representatives Release Call-To-Action On Patient Insight Compensation
31 May 2019
Working with patients and patient organisations - a sourcebook for industry
28 Jun 2019 Framework/guidance
Patient Compensation Tools (Fair Market Value)
30 Jun 2020 Framework/guidance
Patient Engagement by Pharma—Why and How? A Framework for Compliant Patient Engagement
20 Jul 2020 Framework/guidance
Informed Consent Feedback
20 Jul 2020 Article and blog post