Building on the successful experience gained from the European Joint Programme on Rare Diseases (EJPRD) project, the Foundation is preparing to begin a new 7-year project, started on September 1, 2024, funded under the Horizon Europe Framework Programme, The European Rare Diseases Research Alliance (ERDERA). This is one of the nine European Partnerships for Health resilience aimed at partnering public and private sectors to deliver on global challenges and modernise industry.
The ERDERA kick-off meeting will take place in Paris, France, in October 2024.
The project is coordinated by the Institut National De La Sante Et De La Recherche Medicale (INSERM) and involves a further 174 public and private partners from EU and non-EU countries. The project aims to make Europe a global leader in research and innovation related to rare diseases (RD), thereby providing tangible health benefits to patients through improved prevention, diagnosis, and treatment. The partnership seeks to create a robust RD ecosystem, building on the achievements of previous program EJP RD, by promoting patient-centered research, developing new diagnostic tools and pathways, and driving digital transformation linking care, patient data, and research.
The Foundation will lead the project's ethics and regulatory activities, coordinating the Ethics Advisory Group and regulatory support. FGB will guide beneficiaries on ethical issues and support regulatory procedures. Additionally, the Foundation will assess the feasibility of establishing a consultancy service to provide expert support to rare disease researchers.