United States: IVI and EveryLife Foundation announce new initiative on patient-centred outcomes for rare diseases
The non-profit organisations Innovation and Value Initiative and EveryLife Foundation have announced the Engaging Patients with Rare Disease in Identifying Meaningful Approaches to CER and Value Assessment launch as part of their joint rare disease initiative. Made possible by an award from the Patient-Centered Outcomes Research Institute, the initiative will use IVI’s open-source “working lab” approach to engage with clinical and patient experts in the production of a set of recommendations to inform future directions for patient-centred research. The first step in these efforts consists of convening a multi-stakeholder steering committee, with the final report scheduled for release by the end of the year.
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bartosb (24 mai 2023). United States: IVI and EveryLife Foundation announce new initiative on patient-centred outcomes for rare diseases. ELSIBI. Consulté le 19 février 2026 à l’adresse https://doi.org/10.58079/o6bu





