BlackSwan in brief
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 the most common diseases.
The BLACKSWAN Foundation was established in Switzerland in 2010 to advance 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 wide variety of projects. In addition to its funding research mission, 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 established approximately fifty collaborations. Since 2015, 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.