The societal cost of rare diseases is NOK 167 billion annually. This is on a par with the largest diagnostic groups in Norway. This is according to the report "Mapping of social costs related to rare diseases in Norway", which was presented at Arendal Week. In comparison... Read more "New Menon report: Rare diseases are rarely expensive
The biggest obstacle to the introduction of new drugs for rare diseases in Norway is the system for new methods. The article was originally published in Dagens Medisin: https://www.dagensmedisin.no/debatt-og-kronikk/pasienter-med-sjeldne-sykdommer-har-rett-til-forsvarlig-behandling/106182 Kronikk: Arvid Heiberg senior consultant, professor emeritus and Asbjørg Stray-Pedersen, senior consultant dr med and head of the Norwegian... Read more "Patients with rare diseases have the right to proper treatment
Despite the clear order from the Norwegian Parliament, the evaluation of New Approaches does not address the consequences for patients with rare diseases. It is now urgent to put in place a national funding model that ensures good treatment for these patients regardless of... Read more "High time for a new funding model for rare diseases!
If a national strategy for rare diagnoses is to have an impact on those of us who wear shoes, the work on the strategy must be clearly anchored in a lifelong need for various services - and that relatives and professionals across professions are included. The full article... Read more "Rare strategy for vital knowledge
Article byArvid Heiberg, Senior Consultant, Professor Emeritus, Department of Medical Genetics, Oslo University Hospital, Lilly Ann Elvestad and Ingunn Westerheim (FFO). The article was published in Klassekampen 23.09.2019. Advances in genetic engineering are enabling us to map the mechanisms behind a number of diseases we... Read more "Medicine only for the rich?
