Access to Healthcare: Therapies for Rare Diseases. What is Fair?

In this webinar our speakers will discuss access to healthcare with a focus on therapies for rare diseases. We will address the main justice questions that arise regarding access to therapies for rare diseases, exploring the tensions between cost-effectiveness and fairness considerations. We will share examples and tackle how these tensions play out in countries in the Global North and in the Global South.


  • Jasmin Barman-Aksözen, International Porphyria Patient Network & University of Zurich, Switzerland
  • Rosemarie Bernabe, Centre for Medical Ethics, University of Oslo, Norway
  • Julie Makani, Muhimbili University of Health and Allied Sciences, Tanzania & Imperial College London, UK
  • Lars Sandman, National Centre for Priorities in Health & Linköping University, Sweden

Hosts: Nikola Biller-Andorno & Tania Manríquez, University of Zurich
Webinar’s concept: Sebastian Wäscher & Tania Manríquez, University of Zurich

This webinar is jointly organised by the Forum for Global Health Ethics (an outreach project by the Institute of Biomedical Ethics and History of Medicine at the University of Zurich), the European Association of Centres of Medical Ethics (EACME) and the Swiss Medical Weekly (SMW). The webinar will be held in collaboration with ITINERARE (Innovative Therapies in Rare Diseases), a University Research Priority Program (URPP) of the University of Zurich.