We are the RAREvolutionary People
Our purpose started in 2014 when we – as The BLACKSWAN Foundation - have launched the RE(ACT) Community, a human network to share information and boost research about rare and orphan diseases.
Our mission is to connect researchers and ideas because we trust in the power of cooperation and collaboration, promoting scientific projects through crowdfunding. Research efforts on rare diseases are in fact still implemented with little coordination between laboratories, and this approach is particularly detrimental to a field where the resources are limited.
Our goal is to act as game changers in the current scenario, spreading the word about the urgency of investing in rare and orphan disease research.
Our belief is that everyone can contribute to support scientific research because none of us is better than all of us. For this reason, the RE(ACT) Community is not only open to researchers but also to everyone who wants to participate in the advancement of research and increase the development of new therapies for millions of patients affected by rare conditions.
Find out how you can contribute to research on rare and orphan diseases in the 'how it works' dedicate page, and join the social media conversation using the hashtags #RAREvolution #REACTCommunity.
Stand up for scientific research on rare diseases
RE(ACT) Community + RE(ACT) Congress = RE(ACT) Initiative
Dr Olivier Menzel decided to found The BLACKSWAN Foundation when he realized, after years of research in the field of rare diseases, that research projects were inadequately supported both from private and public funding sources. The BLACKSWAN Foundation was created to support and boost research on rare diseases. Two years later, the Foundation organized the RE(ACT) Congress, the first international scientific congress on research of rare and orphan diseases.
The RE(ACT) Congress brought together world leading researchers and young scientists from a variety of breakthrough scientific fields to show cutting edge research, to discuss results and to exchange innovative ideas. Thanks to the RE(ACT) Congress, many collaborations have been established in the last years.
At the beginning, the RE(ACT) Community was conceived to keep researchers connected after the RE(ACT) Congress and make it easy for them to share and access scientific knowledge, but then the Community was developed as a digital platform open to everyone who want to facilitate cooperation, knowledge sharing and support rare disease research.
The BLACKSWAN Foundation
The BLACKSWAN Foundation is a non-profit organization based in Switzerland and created in 2010 to contribute to the development of research on rare and orphan diseases worldwide. Its principal mission is to encourage therapeutic research and to improve public awareness of rare conditions.
The BLACKSWAN Foundation is a unique organisation supporting rare disease research as a whole. This approach takes into account the complexity and hurdles of rare disease research, it helps in finding new solutions that can assist a larger variety of projects, and allows the Foundation to have a greater influence on the public opinion.
Cooperation with other rare disease organizations is of vital importance for the Foundation, which collaborates with national and international patient organizations, academic institutions, research consortia, and centers of expertise. The BLACKSWAN Foundation is an official partner of E-RARE and a member of EURORDIS, the European alliance, and ProRaris, the Swiss alliance of patient organizations.
The BLACKSWAN Foundation’s Board of Trustees includes experts from a range of disciplines including finance, law and the health sciences. The Foundation’s Scientific Advisory Board (SAB) composed by world-leading researchers from Australia, Belgium, France, Italy and the US, represents a guarantee of quality for the selection of research projects for grants and crowdfunding.
The Foundation is officially registered in the Swiss commercial registry, it is supervised by the competent authority at the Swiss Federal Department of Home Affairs (FDHA) and recognized as a public utility foundation.