About The Coalition for Rare Diseases

The Coalition for Rare Diseases - established by companies offering treatment for rare diseases in Norway.

The Coalition for Rare Diseases (the Coalition) works to improve the quality of life for patients with rare diseases through medical treatment, when such treatment is available. The Coalition aims to build awareness of rare diseases and conditions for patients in Norway. The Coalition currently consists of the following companies; Amicus, Alexion, Alnylam, Chiesi, Sanofi, Sarepta, Shire, Vertex and Zogenix.

Since 2015, The Coalition has worked for a better framework for medical treatment for patients with rare diseases. The engagement has been executed through formal and informal settings, i.e. through participating in Parliamentary and ministerial hearings and in meetings with key political and clinical stakeholders.

With regards to important stakeholders, the Coalition has, since its beginning, been fortunate enough to engage with a competent and important network within the rare diseases field. Today, that network consists of key stakeholders like The Norwegian Federation of Organisations of Disabled People (FFO),  The Norwegian National Advicory Unit on Rare Disorders (NKSD), The Norwegian Association of Youth with Disabilities and clinicians, professors, medical professionals and advocacy groups.

Our work

The objective of the Rare Disease Coalition is purely political and policy oriented.

Coalition meetings and strategy work does not include product pricing or market activity discussions.

All meetings within the coalition should include at least one representative from each company.

Meetings with stakeholders, media and KOLs require minimum two spokespersons from separate companies.

Companies wanting to join the coalition will be proposed through Rud Pedersen. The company will be granted membership if a majority finds the requesting party relevant for the coalition.

Interested in our work?

If you are representing a biotechnology or a biopharmaceutical company and have questions about the Coalition, you’re most welcome to contact us.