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Institute of Biomedical Ethics and History of Medicine (IBME) Forum for Global Health Ethics

Webinar on Rare Diseases and Access to Healthcare

In this webinar we discussed 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 

Organisers: Forum for Global Health Ethics (an outreach project by IBME), European Association of Centres of Medical Ethics (EACME) and Swiss Medical Weekly (SMW) 

Webinar's concept: Sebastian Wäscher & Tania Manríquez 

Read the viewpoint «Healthcare access and health equity: intricate challenges for rare diseases» by Susanne Wehrli and Sebastian Wäscher 

Here you can watch the clips of this webinar.

If you have any questions or suggestions send us an email.