Organization
Congress initiators and management
The BLACKSWAN Foundation is a Swiss foundation contributing 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. The BLACKSWAN Foundation also 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 started an international advocacy and awareness campaign called #RAREvolution to ensure rare diseases are recognized as an international public health and research priority. The BLACKSWAN Foundation is member of Eurordis (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 (Swiss alliance of patient organizations).
IRDiRC, officially launched in 2011, was originally conceived with two main goals: to contribute to the development of 200 new therapies and the means to diagnose most rare diseases by the year 2020. Considerable progress on these goals has been made: 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 devised a new set of global rare disease goals for the decade 2017-2027. IRDiRC aims to accelerate progress with three goals for the Consortium, and ambitiously push the limits of what is currently possible in the longer 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.
The European Joint Programme on Rare Diseases brings over 130 institutions from 35 countries: 27 EU Member States (Austria, Belgium, Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Croatia, Ireland, Italy, Netherlands, Latvia, Lithuania, Malta, Poland, Portugal, Romania, Spain, Sweden, Slovakia, Slovenia, United Kingdom), 7 associated (Armenia, Georgia, Israel, Norway, Serbia, Switzerland, Turkey) and Canada, to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.
http://www.ejprarediseases.org
Scientific advisory board (alphabetical order):
- Jacques Beckmann, CH
- Gareth Baynam, AU
- PJ Brooks, US
- Magda Chlebus, BE
- Ronald Cornet, NL
- Adam Hartman, US
- Virginie Hivert, FR
- Daria Julkowska, FR
- Alexander Hoischen, NL
- Donald Lo, NL
- Helen Malherbe, ZA
- Olivier Menzel, CH
- Lindsey Murray, US
- Eleni Papanikolou, DE
- David Pearce, USA
- Samantha Parker, FR
Organising committee (alphabetical order):
- Thomas Amiconi, Amiconi Consulting SA, CH
- Daria Julkowska, EJP RD, FR
- Olivier Menzel, BLACKSWAN Foundation, CH
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, which, thanks to its experience, professionalism, and dynamism, is equipped to find efficient and innovative solutions for organizing conventions, meetings, incentive travel programs, tours, seminars, meetings, product launches, and events. Amiconi Consulting performs at the regional, national, and international levels. They provide various services, from general advice to highly focused solutions.
