The initiative RARE STORIES seeks to close the knowledge gap on rare diseases and to advocate the need for a better national coordination of rare diseases in Sweden. The initiative was founded in 2016 when Film and Tell together with Rare Diseases Sweden joined forces to launch the film festival RARE DISEASES. A festival that falls on the Rare Disease Day – a day initiated to raise awareness of rare diseases around the world. We gathered the community, the public, decision-makers, and professionals within the health care system, for a inspiring and inclusive days filled with films, meetings, and discussions both in 2016 and 2020.
We drew attention to the issue. Before the festival in 2020, 46 percent of the population was familiar with the issue, after 49 percent. On both occasions most major media in Sweden reported on the festivals, with a total reach of more than 14 million people. Together with partners, we keep working to enhance the living conditions of people living with a rare disease in Sweden and internationally.
