World Duchenne Organization is involved in Share4Rare, a platform to boost rare disease research and recently, a new and improved role was introduced to the platform for patient organisations (POs). To share this important update and engage with rare disease POs, there will be a virtual meeting on a webinar for Patient Organisations in Rare…
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European Biotech Week: Celebrating Innovation The European Biotech Week established itself as a week of celebrations of science and biotech. This year, #biotechweek will be from 28 September to 4 October 2020, start planning your #biotech event and register it with #EuropeanBiotechWeek. It can be anything, from a science cafe to a seminar, an artistic performance,…
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EJP RD activities that will be introduced during the sixth ELIXIR All Hands Online meeting 2020 that will take place virtually 8 -10 June 2020. The meeting brings together members of the ELIXIR community from across the ELIXIR Nodes, and collaborators from partner organisations, in order to review ELIXIR’s achievements and activities so far and discuss…
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The European Commission led a highly successful round of funding for diagnostics, treatments and vaccines against coronavirus. These resources must be used in the most efficient way possible. The best way is via cross-border, multi-sector and multi-disciplinary research collaboration based on existing networks, to reach a scale of partnerships and coordination that has yet to…
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‘Journey of Hope’ is a short film offering a glimpse in to the lives of families where children have received a rare genomic diagnosis. In a world where labels and diagnosis are often framed negatively, this film highlights the reality of both the search for a diagnosis and the impact of the diagnostic moment. Above…
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EJP RD is participating at the ECRD online conference that takes place today and tomorrow. In particular, tomorrow our coordinator, Dr. Daria Julkowska, will be one of the speakers presenting during SESSION 0503: « From Research to Access: Is a European Collaborative Approach Possible? » which is part of the » THEME 5 ACHIEVING THE TRIPLE AS BY 2030:…
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On 4 May, the European Union joined forces with global partners to kick-start the Coronavirus Global Response, a worldwide pledging effort to raise €7.5 billion of funding to rapidly develop and deploy universally available and affordable diagnostics, treatments, and vaccines against the Covid-19. The opening event already raised €7.4 billion, including a significant contribution of…
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GA4GH 8th Plenary will now be completely virtual, save the dates: September 29 – 30 2020. The 8th Plenary will bring together organizations and stakeholders from the genomics and health community for two days of keynotes, talks, updates, and workshops that will focus on advancing development work for the immediate data sharing needs of the community. Stay tuned for more details,…
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ERN TransplantChild gives some important recommendations for transplanted patients and their families to take care of their health after this complex procedure. The guide is common for all types of transplants and includes different aspects of the post-transplantation process such as medication, rejection, infections, emotions and some frequently asked questions. The Patient’s Guide is in English,…
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Efficient international collaboration and data sharing, two key components in the advancement of genomic medicine and human health, are proving essential for effectively responding to the global COVID-19 pandemic. The Global Alliance for Genomics and Health is focused on developing standards and guidance for responsibly sharing human genomic and related health data. Because of this, the…
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