The Commission for Innovative and Rare Pharmaceuticals is a collaboration between ten world-leading biotech companies operating in Sweden.

Our mission is to improve the Swedish model for evaluation and funding of innovative and costly drugs for patients with rare diseases.

The companies within the commission recognizes the pressing need for change and agree on the shortcomings of the approval and funding process which often prevents early access to groundbreaking and potentially life transforming therapies for Swedish patients.

The companies of the Commission for Innovative and Rare Pharmaceuticals are:Alexion, Amicus, BioMarin, Chiesi, Johnson & Johnson, Orchard Therapeutics, Roche, Sanofi Genzyme and Vertex. We are involved in numerous fields such as cystic fibrosis, Gaucher’s disease, pulmonary arterial hypertension, oncology and metabolic diseases.

Sweden has regressed from being among being at the forefront of introducing new drugs due to the current bureaucratic and often arbitrary evaluation process.

The existing evaluation models for medications in rare diseases do not appropriately reflect the improvements to patients’ lives, and the delay of introductions lead to disease progressions, unnecessary suffering and eventually death for the patients.

The Commission advice the Swedish government to take a closer look at the issue of access to new therapies for patients with rare and life-threatening diseases.


The companies behind ISL-forum are research-intensive biotech companies offering innovative therapies in a variety of different fields within rare or ultra-rare diseases.