IRDiRC is funded by the European Union through the European Joint Programme on Rare Disease under the European Union’s Horizon 2020 research and innovation programme grant agreement N°825575. It finances the Scientific Secretariat, which provides organizational and communications support for the Consortium and its various members. The Scientific Secretariat is hosted at the French Institute of Health and Medical Research (INSERM) in Paris, France.
The role of the Scientific Secretariat includes:
- Reinforcing international cooperation in research on rare diseases through regularly organized meetings and support of coordinated actions between various stakeholders, including funding agencies, academic research groups, clinicians, regulators, companies, and patient advocacy organizations, thus facilitating the exchange of information, optimizing the use of resources, and enabling the sharing and publication of data.
- Strengthening the links between academic groups and companies to translate their efforts into new diagnostic tools and therapies.
- Encouraging and strengthening collaborations with patient advocacy organizations to ensure patients’ integral role in all relevant aspects of rare diseases research.
- Contributing to the establishment of standard policies and guidelines through support to the development of standard operating procedures, data standards, better classification of rare diseases, and interoperable computational standards and tools.
- Assisting the Consortium in knowledge management through the collection of rare disease research outcomes, monitoring policy development worldwide, measuring progress made in the field, and sharing emerging best practices in rare diseases research.
- Disseminating and communicating the IRDiRC vision, goals, activities and their outcomes to all members, the larger rare disease community, and the public by various means, including journal publications, conference presentations, press releases, newsletters and social media.