Rare diseases affect 6% to 8% of the world population and approximately 500,000 people in Switzerland. The majority of these conditions affect children and in three out of four cases have a fatal outcome. The quest for specific drugs is a priority, especially as the effectiveness of certain rare disease drugs has been demonstrated in the treatment of most common diseases.
The BLACKSWAN Foundation was established in Switzerland in 2010 to contribute to the development of research on rare and orphan diseases worldwide. The Foundation supports research on all different types of rare and orphan disease, which makes its vision unique and helps in finding new solutions that can assist a large variety of projects. Besides its funding research mission, the Foundation organizes every two years the RE(ACT) Congress, which became an international reference point for rare disease experts. In three editions, more than 1,500 scientists were able to establish approximately fifty collaborations. In 2014, the BLACKSWAN Foundation launched the RE(ACT) Community a crowdfunding and a knowledge sharing digital platform that connects researchers, patients and other rare disease stakeholders. Since 2015, BLACKSWAN Foundation has also started an international advocacy and awareness campaign called #RAREvolution to ensure rare diseases are recognized as an international public health and research priority.