Time is running out for rare patients
From left: Fredrik Arneberg (UCB) and Kristin Mesteig (Sanofi) attended a hearing at the Health and Care Committee.
Events
Prioritizing treatments for rare diagnoses: key perspectives from the panel discussion
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
Input on proposals on the need for a national funding solution for rare diagnoses
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
Rare Disease Days 2023
Rare Disease Day is held on 29 February every year worldwide and is added to 28 February when it is not a leap year. In Norway, FFO has an event to mark the day and bring together those affected either as patients or... Read more "Sjeldendagen 2023
Rare diagnoses require rare solutions
New knowledge should lead to new priorities. At the Coalition's meeting during Arendalsuka 2022, Menon Economics presented its findings in the report for the first time to key decision-makers, experts and patient representatives in the field of rare diseases. The Coalition invited to a panel discussion between key... Read more "Rare diagnoses require rare solutions
Arendalsuka - The patient's health service - also for the few?
During Arendalsuka 2021, the Coalition invited to a conversation about the framework for the field of rare diseases, how this has evolved, and how it is hoped that the strategy can help provide a direction for the field that safeguards the framework that is already in place... Read more "Arendalsuka - The patient's health service - also for the few?