The Therapies Scientific Committee (TSC) is establishing a Task Force on Digital Twins in Rare Disease Research and Care to assess the opportunities and barriers associated with their use, ensuring responsible, equitable, and sustainable implementation. IRDiRC is looking for experienced members to populate this Task Force with the above expertise and experience in the following areas:
- Researchers with experience in rare disease research and therapy development, including work with small, heterogeneous populations and limited datasets.
- Clinicians and diagnostic experts, familiar with omics integration, rare disease endpoints, longitudinal phenotyping, and non-standard or adaptive trial designs.
- Experts in digital twins and artificial intelligence, applied to healthcare, with the ability to critically assess use cases rather than promote technology unconditionally, including experience with hybrid modelling approaches, model validation under data scarcity, and interaction with regulatory or evidence-acceptability processes.
- Bioethics and legal experts, with experience in data governance, privacy protection, consent models, and inclusivity in rare disease contexts.
- Regulatory or health policy experts, familiar with rare disease trial methodologies, surrogate endpoints, real-world evidence, and the acceptability of innovative in silico approaches.
- Patient advocates with lived experience of rare diseases, able to contribute as equal partners in analysis and recommendation development, including shaping assumptions, priorities, and interpretation of model outputs, with attention to uncertainty and real-world relevance.
The call for candidates is open to experts from around the globe.
The usual time commitment includes monthly 1-hour teleconferences, one face-to-face workshop (2 days), regular email correspondence and collaborative working, with the opportunity to co-author peer reviewed article(s).
If you are interested in taking part in this activity, please send a CV, biosketch and letter of motivation clearly describing your expertise to the Scientific Secretariat before the 20th of February, 2026.
Please add in the subject of your email the reference for this call Ref: TF-DT.
Only selected candidates will be contacted.