ERN Workshop on future research on innovative diagnostics and interdisciplinary treatment for spina bifida (spinal dysraphism)

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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 organised by Centre de Référence Spina…

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UN General Assembly formally adopts Resolution on Persons Living with a Rare Disease and their Families

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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 the consensus of all 193 UN Member States the UN Resolution on Addressing the Challenges of Persons Living with a Rare…

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EMA Webinar: Research in regulatory science – addressing the needs

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The European Medicines Agency (EMA) is organising a virtual event on « Research in regulatory science – addressing the needs » to inform the public and stakeholders about regulatory science research needs and how stakeholders can engage with these regulatory science research needs. The webinar will take place on January 18th 2022 from 10.00 – 12.00 CET. Gaps exist in regulatory science that…

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AFM-Téléthon to launch Medical Research Call for Proposals in Neuromuscular Disorders

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Similar to its upcoming Scientific Call for Proposals 2022, the French Muscular Dystrophy Association (AFM-Téléthon) will soon launch its a Medical Research Call for Proposals in Neuromuscular Disorders. Open to both French and foreign teams, the objective of the call is to support medical research projects whose aim is to improve the care and management of patients,…

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ERN Workshop on contemporary outcome measures in neuromuscular diseases

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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,…

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ERN Workshop on endocrine cancer: A challenge in adults and children

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In the context of EJP RD’s ERN Workshops, a face-to-face workshop on « Endocrine cancer: A challenge in adults and children » aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute. The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National…

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