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).
E-Rare is a European Area Network for research programs on rare diseases. It gathers 25 funding organizations from 17 European, Associated and non-European countries. The principal goal of E-Rare is the maximization of scarce resources and coordination of efforts to develop research in the area of rare diseases via systematic funding and exchange of best practices. E-Rare consortium is a member of International Rare Diseases Research Consortium (IRDiRC) that aims at development of 200 new therapies and diagnosis for most rare diseases by 2020. E-Rare is coordinated by the French National Research Agency (ANR).
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