Following a sustained campaign by rare disease patient advocacy organisations such as Rare Diseases International and with the support of several Member States, the United Nations (UN) General Assembly has formally adopted on December 16th 2021 with […]
Read MoreIRDiRC member InnoSkel, a pioneering biotechnology company developing transformative therapies for the unmet needs of individuals with rare bone disorders, announced on December 16, 2021 that it has been awarded […]
Read MoreIRDiRC member InnoSkel, a pioneering biotechnology company developing transformative therapies for the unmet needs of individuals with rare bone disorders, announced on December 16, 2021 that it has been awarded […]
Read MoreThe Therapies Scientific Committee (TSC), the Interdisciplinary Scientific Committee (ISC) and the University of Twente, the Netherlands, are jointly establishing a Working Group to explore the role and value of […]
Read MoreThe Therapies Scientific Committee (TSC), the Interdisciplinary Scientific Committee (ISC) and the University of Twente, the Netherlands, are jointly establishing a Working Group to explore the role and value of […]
Read MoreThe Funders Constituent Committee (FCC) have set up a Task Force to identify barriers and opportunities for the use of telehealth to improve diagnosis, care, and research experiences for rare disease […]
Read MoreThe Funders Constituent Committee (FCC) have set up a Task Force to identify barriers and opportunities for the use of telehealth to improve diagnosis, care, and research experiences for rare disease […]
Read MoreThe Chan Zuckerberg Initiative (CZI) has launched a Request for Information (RFI): Patient Registry Data Interoperability as part of the Rare As One project, aimed at mapping data interoperability challenges and support ideas that will make it […]
Read MoreThe Chan Zuckerberg Initiative (CZI) has launched a Request for Information (RFI): Patient Registry Data Interoperability as part of the Rare As One project, aimed at mapping data interoperability challenges and support ideas that will make it […]
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