ERDERA – European Rare Diseases Research Alliance

Bringing new hope to patients with rare diseases is the vision of ERDERA, which aims to support the coordination of research efforts between Member States, Associated Countries, and non-European countries in the field of rare diseases (which, among at least 7,000 diseases, affect between 26 and 30 million people in Europe). This partnership, whose mission is to transform research and care for rare diseases in Europe, follows on from the previous European Joint Program on Rare Diseases.

ERDERA brings together more than 180 organizations from 36 countries, including world-leading research institutes, patient organizations, European research infrastructures, pharmaceutical and technology companies, public funding agencies, philanthropic and private funders, regulatory institutions, health authorities, hospitals, universities, and medical associations.

The specific nature of research in this field—which is naturally fragmented given the limited number of patients per disease and in different geographical areas, making it difficult to establishcohortsand acquire relevant knowledge and experience—is a prime example of an area of study that requires transnational collaboration/coordination.

FCT, the Agency for Clinical Research and Biomedical Innovation, the University of Coimbra, and the Dr. Ricardo Jorge National Institute of Health are the Portuguese organizations that make up ERDERA.

This initiative has received funding from the European Union's Horizon Europe Research and Innovation Program, Grant Agreement No. 101156595.