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

The purpose of the commission 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 agree on the shortcomings of the approval and funding process which often prevents early access to new and potentially life transforming therapies for Swedish patients.

Sweden is no longer among the early markets for introduction of new drugs due to the bureaucratic and often arbitrary evaluation process.

The Commission advices 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 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 price of narrow, research-intensive rare and innovative pharmaceuticals is often raised as the main issue of the debate. However, these pharmaceuticals only represent a few percent of the total national cost for pharma subsidies.

The companies of the Commission for Innovative and Rare Pharmaceuticals are: Alexion, Amicus, BioMarin, Chiesi, Janssen, 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.


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.