11th European conference on rare diseases & Orphan Products

  The ECRD is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place. Leading, inspiring and engaging all stakeholders to take…

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Eurordis Black Pearl Awards 2022

The eleventh edition of the Black Pearl Awards will take place online on Tuesday, February 8th, 2022 from 18:00 until 19:30 CET and will bring together persons living with a rare disease, patient advocates, policy makers, scientists, healthcare professionals, industry representatives, and more. Registration for the Online Ceremony is now…

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Workshop for future research on innovative diagnostics and interdisciplinary treatment for Spinal Dysraphism

  In the context of EJP RD’s ERN Workshops, an in-person workshop titled “Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment” aimed at sharing participants’ expertise on research in different areas of spinal dysraphism and opening the way to new research projects is being…

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EJP RD Joint Transnational Call 2022

The European Joint Programme on Rare Diseases announced on December 14th 2021 the official launch of the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases. The aim of the funding opportunity is to…

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EJP RD’s ERN Workshop – Contemporary outcome measures in neuromuscular diseases

In the context of EJP RD’s ERN Workshops, a hybrid workshop on “contemporary outcome measures in neuromuscular diseases” aimed at understanding the advancement of technologies with digital outcome measures in neuromuscular diseases is being organised by Prof. Sabrina Sacconi of University Hospital Nice.The hybrid event (in-person on site and online by videoconference) will take place over two days on: March 4th – 5th, 2022 at…

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