The board game FAIRopoly developed by EJP RD illustrates the FAIRification steps followed by the ERNs registries to make their data more Findable, Accessible, Interoperable, and Reusable. The player starts the game on the top left corner of the board and moves around clockwise one tile at a time. Follow the link to fully explore…
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On February 25th, a new Rare Care Centre was launched in Australia, which will provide a holistic model of care for children with rare and undiagnosed diseases. Based at Perth Children’s Hospital (PCH), the Centre has secured funding from leading Australian philanthropists and foundation, with a total commitment of 10 million Australian dollars over 5 years.…
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As part of the training activities proposed by EJP RD, an international course entitled « Training for patient representatives and advocates on leadership and communication skills » is a 2-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, open to patient representatives involved in the 24 European Reference Networks (ERNs), including members of the European Patients…
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As part of the training activities proposed by EJP RD, the International Summer School on Rare Disease Registries and FAIRification of Data is a 5-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, aimed at the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients’ representatives.…
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On the occasion of Rare Disease Day 2022 (February 28th), the International Rare Diseases Research Consortium (IRDiRC) has released an introductory video that presents an outline of the Consortium and its goals. This video also marks the occasion of 10 years of IRDiRC (2011 – 2021).
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The 2nd International Conference on Rare Diseases is being organized by 95, Rare Alliance Greece. With the theme of « The Balancing Act between Equity and Sustainability », the Conference aims to promote the need to foster innovation and the positive contribution that innovation can make in promoting social cohesion, reducing inequalities and expanding opportunities persons living with…
DétailsIn the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Translational research on bone impairment in rare diseases” aimed at giving an update on translational research on bone impairment in rare diseases and bringing together experts and trainees to facilitate collaborations is being organised by Justine Bacchetta of the Faculty of Medicine of Lyon. The in-person event will take place over…
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To commemorate Rare Disease Day 2022 (February 28th), EJP RD is proud to announce the launch of our Instagram account and an exciting social media collaboration with rare disease influencer Prof. Lara Bloom, President and CEO of the Ehlers-Danlos Society. On Rare Disease Day 2022, Prof. Bloom will take over our Instagram account and post…
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The European Commission (EC) has adopted the 2022 work programme of the European Innovation Council (EIC), opening funding opportunities worth over €1.7 billion in 2022 for breakthrough innovators to scale up and create new markets. This includes €60.5 million to tackle three Transition Challenges, notably one on the development of RNA-based therapies and diagnostics for…
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The dates for the 2022 edition of the Innovation Bootcamp in Rare Diseases (IBRD2022), sponsored by Congress Care, have been announced. The event is targeted towards all professionals involved in the prevention, treatment and diagnosis of rare diseases and orphan drug research and development, including researchers, clinicians, pharma, policy makers and patient representatives. This in-person event will…
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