STARTS TODAY! Third run of MOOC on Diagnosing Rare Diseases: From the Clinic to Research and back

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The third run of the MOOC (Massive Open Online Course) “Diagnosing Rare Diseases: from the Clinic to Research and back” co-developed by the European Joint Programme on Rare Diseases, ERN Ithaca, ERN Genturis and the French Foundation for Rare Diseases starts TODAY (April 18th)!  Registrations are free and open at this link.  We specifically encourage medical and biomedical science students to register…

IMI impact on patient involvement event

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The Innovative Medicines Initiative (IMI) is organising a series of online live sessions on IMI’s Impact, where key actors will explore the challenges and demonstrate how IMI contributed. The next session will be focused on patient involvement on the 7 October at 14:00-15:30 (CET/Brussels Time). Registration is open here. They will analyse the challenges and…

EATRIS launches survey on Patient Engagement in Academic Research

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The European Advanced Translational Research Infrastructure in Medicine (EATRIS) together with the European Patients Forum (EPF), the European AIDS Treatment Group and the European Patients Academy (EUPATI) have co-launched a short anonymous survey on Patient Engagement in Academic Research. Targeted primarily at academic researchers, they encourage any academic researcher regardless of their research focus and…

Share4Rare 1st open call for patient-driven research projects

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The Share4Rare Project announces its 1st open call for patient-driven research projects targeted towards patient organisations and researchers in the field of rare diseases to apply for conducting their patient-centred studies within the platform. The call is currently open but will close on July 15th at 17:00 CET. Applicants who are selected can avail the following benefits: Facilitation of communication with patients, their carers…

World Duchenne Organization announces Duchenne Care Conference 2021

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The World Duchenne Organization (WDO) is hosting an online Duchenne Care Conference intended for patients, family members, clinicians and others involved in the care of individuals affected by Duchenne and Becker Muscular Dystrophy. The online conference will take place over four evening sessions of 2.5 hours each on June 1–4, 2021. The conference will provide simultaneous interpretation in various…