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).

The European Rare Diseases Research Alliance (ERDERA) is the European partnership for rare diseases, bringing together more than 170 public and private organisations across 37 countries to advance rare disease research and innovation. Building on previous European efforts, ERDERA works to strengthen collaboration across the rare disease ecosystem, support patient need-led research, improve access to knowledge, resources and services, and help accelerate progress in prevention, diagnosis and treatment for the more than 30 million people living with a rare disease in Europe.

By connecting researchers, clinicians, patient organisations, funders, policymakers, industry and research infrastructures, ERDERA aims to reduce fragmentation and support a more coordinated, inclusive and sustainable research environment for rare diseases in Europe and beyond.

ERDERA has received funding from the European Union’s Horizon Europe research and innovation programme under grant agreement N°101156595.

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.