At a time when health policy and medical care are constantly evolving, the issue of prioritizing treatments for rare diagnoses has become a key area of focus. Recently, an important discussion was held that brought together representatives from patient organizations, industry and other stakeholders... Read more "Prioritizing treatments for rare diagnoses: key perspectives from the panel discussion
The Coalition for Rare Diseases consists of five biotech companies working to improve the quality of life and health of patients with rare diseases. We work for good and predictable framework conditions for medical treatment, when such treatment is available. People with rare diseases experience... Read more "Input to expert groups - the prioritization report
The Coalition for Rare Diseases thanks the Progress Party for choosing to focus on rare diseases with this input meeting. My name is Fredrik Arneberg and I am here with Bjørn-Kristian Svendsrud on behalf of the Coalition for Rare Diseases. "There is something beautiful... Read more "The Coalition's oral consultation input
Our input to the proposal The Coalition for Rare Diseases thanks the Norwegian Parliament for choosing to focus on patients with rare diseases. It is the coalition's opinion that the current funding system is not sustainable, and that it primarily affects patients. I... Read more "Input on the proposal on the need for a national funding solution for rare diagnoses
The Coalition for Rare Diseases is strengthening its work with UCB as a new partner in its efforts to improve the quality of life and health of patients with rare diseases. The Coalition for Rare Diseases thus goes from 4 to 5 biotech companies and joins... Read more "UCB joins the Coalition
FrP, represented by Bård Hoksrud, submitted a proposal on 08.03. 2023 proposal to make it easier for people with rare diseases in Norway to access good and effective treatment.
In brief, the proposal is based on:
- A national funding scheme
- Rarity as a separate criterion
- Ensure rapid access to new and available medicines for patients with rare diagnoses
Thank you for the opportunity to participate in this hearing. I, Kristin Mesteig and my colleague Bjørn-Kristian Svendsrud represent the Coalition for Rare Diseases, which consists of several biotech companies. We work to improve the treatment and quality of life of people with rare diagnoses... Read more "The Coalition participated in the hearing on the State Budget 2023
The Coalition for Rare Diseases (the Coalition) refers to the Storting's website and the invitation to participate in the consultation on Prop 1S (2022-2023) for the budget year 2023 under the Ministry of Health and Care Services. In this consultation response, the Coalition requests that the Health and Care Committee: The basic allocations shall from... Read more "The Coalition 's input to the State Budget for 2023
The Coalition for Rare Diseases (the Coalition) thanks you for the opportunity to provide input to the Ministry's work on the National Health and Coordination Plan. We would like to draw the Ministry's attention to the following elements that we believe should be given special focus in the work... Read more "Input to the National Health and Coordination Plan
The Coalition thanks you for the opportunity to provide input to the Ministry's work on revising the strategy for personalised medicine. We would like to draw the Ministry's attention to the following four elements that we believe should be included in the upcoming work on... Read more "Input to the revision of the strategy for personalised medicine
