As part of the Rare as One Project, The Chan Zuckerberg Initiative (CZI) is seeking information about registry interoperability. Responses are encouraged from patient communities, researchers, clinicians, health technology developers and a diverse range of experts to share knowledge and submit information that can help address similar challenges from different perspectives. If this is relevant to you, click here for more information.
Submissions close 30 November 2021.
Rare Voices Australia will be making a submission, however, we note that registry interoperability is an important issue that would benefit from the breadth of knowledge of the rare disease sector.