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OBJECTIVES This combined webinar & workshop will provide an update on Solve-RD Sandbox services/functions, and also consider future plans, needs and possibilities. Intended participants include…

Muscular Dystrophy UK will host a Muscles Matter Seminar on Congenital Muscular Dystrophy on Tuesday the 29th of March from 10am – 12pm CET. The…

Next webinar organised by ERN-RND will be on : ‘Measuring disease severity in chronic progressive myelopathy’​ by Marc Engelen 15 March 2022, 3-4pm CET The…

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…

Every year, Eurordis, the European Federation of Rare Disease Organizations, coordinates Rare Disease Day – the International Day for Rare Diseases – on the last…

“Versatility is key to the development of health technology for children and young people so that it is adaptive to their social, physical and developmental…

recording coming soon Delivered by Anne Koy, 7 December 2021, 3-4pm CET The speaker is neuropeadiatrician and head of the Centre for Dystonic Movement Disorders…

Delivered by Jorik Nonnekes on 12th october 3-4pm CEST The speaker is consultant physiatrist and researcher at the Radboud University Medical Centre (Radboudumc), Department of…

Research on rare conditions can be a great challenge, both practical and methodological. To counteract small study populations with a rare disease, large, collaborative, international…

Virtual Meeting, 21-25 September 2021

Share4 Rare is organizing a webinar for families who want to join the Share4Rare research pilot. This research project focuses on how being an /…

Rare Disease Day 2021 will take place on Sunday 28th February and around the world many awareness raising events have been organised. We would like…