Organization
The BLACKSWAN Foundation is a Swiss foundation that supports 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 identify new solutions that can assist a wide range of projects. In addition to its funding research mission, the Foundation founded and organizes the RE(ACT) – Rare Disease Research Congress every two years, which has become an international reference point for rare disease experts. Since 2015, the BLACKSWAN Foundation has started a global advocacy and awareness campaign called #RAREvolution to ensure rare diseases are recognized as an international public health and research priority. The BLACKSWAN Foundation is a member of Eurordis (a non-governmental, patient-driven alliance of patient organizations), Rare Diseases International (RDI – the global alliance of people living with a rare disease of all nationalities across all rare diseases), and ProRaris (a Swiss alliance of patient organizations).
To leave no one behind, over 170 organizations, championed by the European Union and its member states, are working hand in hand to make Europe a world leader in rare disease research and innovation. The European Rare Disease Research Alliance (ERDERA) will take over EJPRD to deliver concrete health benefits to rare disease patients over the next decade by advancing research on prevention, diagnosis, and treatment.
IRDiRC, officially launched in 2011, was initially conceived with two main goals: to contribute to the development of 200 new therapies and to develop the means to diagnose most rare diseases by 2020. Considerable progress has been made on these goals: the goal to deliver 200 new therapies was achieved in early 2017 – three years earlier than expected – and the goal for diagnostics is within reach. Capitalizing on the momentum of this progress, IRDiRC set new global rare disease goals for 2017-2027. IRDiRC aims to accelerate progress with three goals for the Consortium and, ambitiously, to push the limits of what is currently possible in the long term, with an audacious vision for the field, all with rare disease patients’ lives in mind. The vision: Enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention.
Organising committee (alphabetical order):
- Thomas Amiconi, Amiconi Consulting SA, CH
- Daria Julkowska, ERDERA, FR
- Olivier Menzel, BLACKSWAN Foundation, CH
- David Pearce, IRDiRC, USA
Congress secretariat and registration
Amiconi Consulting SA, Via al Forte 10 CH – 6900 Lugano
T: +41 91 921 38 12
Email: congress (at) react-congress.org
Amiconi Consulting is an internationally recognized company that, thanks to its experience, professionalism, and dynamism, is well-positioned to deliver efficient, innovative solutions for organizing conventions, meetings, incentive travel programs, tours, seminars, conferences, product launches, and events. Amiconi Consulting performs at the regional, national, and international levels. They provide a range of services, from general advice to highly focused solutions.