Rare diseases affect 6% to 8% of the world's 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 developing research on rare and orphan diseases worldwide. The Foundation supports research on all types of rare and orphan diseases, which makes its vision unique and helps find new solutions that can assist a large variety of projects. Besides funding research, the Foundation organizes the RE(ACT), Rare Disease Research Congress, every two years, which has become an international reference point for rare disease experts. In eight editions, more than 1,800 scientists were able to establish approximately fifty collaborations. Since 2015, the BLACKSWAN Foundation has also started an international advocacy and awareness campaign called #RAREvolution to ensure rare diseases are recognized as a global public health and research priority.