Share4Rare Call4Projects 2022 for patient-centred research initiatives

The 2nd Share4Rare Call for Research Projects will be open until December 10th 2021.

Share4Rare aims to put rare diseases patients at the centre of research, not only by asking them directly regarding their condition but also by providing them a safe platform where they can participate in collaborative research projects.

The Share4Rare platform enables to gather data from patient and caregivers on disease related questions and other areas of scientific interest: burden and impact of the disease, its natural history, how the disease affects quality of life, etc.

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ERKReg Reaches 10,000 Patients

The ERKReg, a Web-based registry for all patients with rare kidney diseases, recently established by the European Rare Kidney Disease Reference Network (ERKNet), has just crossed the 10,000 patients mark.

This important milestone was reached after the 10,000th patient has been enrolled in the Registry by Ghiles Larbi from the Necker Hospital in Paris, France. Almost 1800 patients have already been enrolled from the Necker Hospital!

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Announcement of the launch of “Open Research Europe”

Open Research Europe (OCE) is an open access publishing platform for the publication of research stemming from Horizon 2020 funding across all subject areas. The platform makes it easy for Horizon 2020 beneficiaries to comply with the open access terms of their funding and offers researchers a publishing venue to share their results and insights rapidly and facilitate open, constructive research discussion.

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