EURORDIS has launched a new contribution on ERNs and health data to trigger a strategic discussion on health data and ERNs that will allow the Networks to have a long-term strategy that is aligned with their needs and ambition. The proposal aims to progress towards developing a comprehensive ERN data strategy that is structured around…
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Global research and innovation forum: towards a research roadmap The World Health Organization (WHO) has recently developed and launched this official document to Powering research to control the epidemic. Broad consensus on the need for research to focus on actions that can save lives now. To ensure that those affected are promptly diagnosed and receive…
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The European Commission launched the “COVID-19 Clinical Management Support System” with the aim to support clinicians in hospitals that are currently facing the coronavirus emergency all over Europe. Based on the experience with the European Reference Networks, the initiative will help to create rapid connections across Europe among the hospitals indicated by the Member States as…
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EMA has developed this guidance covering actions that sponsors of ongoing clinical trials affected by the coronavirus disease (COVID-19) pandemic should take to help ensure the integrity of their studies and interpretation of study results while safeguarding the safety of trial participants as a first priority. This complements the good clinical practice guidance on how sponsors should adjust the management of clinical…
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EURO-NMD has taken some important actions in response to the Covid-19 crisis. In particular, two online surveys have been developed, a Covid-19 patient survey with few simple questions about the relationship between those people with NMDs and the virus, and a Covid-19 hospital one targeting clinicians. Both surveys can be found on the homepage at…
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Jazz4Rare 2020, a unique jazz concert took place in Emigration Museum in Gdynia on Rare Disease Day. Concert was positive kind of trial of building awareness event build on sensory experience thru jazz music & vocal. The event gather almost 300 visitors who spent 2 hours on listening and feeling jazz states of rareness served…
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In the context of the current COVID-19 pandemic and in line with WHO guidelines, the upcoming European Conference on Rare Diseases & Orphan Products (ECRD) will now take place online on 14-16 May. The health and safety of all stakeholders participating in ECRD, including people living with a rare disease and their carers, is our…
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Rare but not uncommon « A more integrated system of gathering genomic data offers a solution with potential channels for return on investment » is the focus of the recent World Economic Forum project on Rare Diseases. Only 5% of the 475 million people with rare disease have a treatment. Given that 80% of these diseases have…
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ICPerMed and ERA PerMed published the joint statement « Towards the Implementation of Personalised Medicine in Europe – The Advantage of a European Partnership« . The statement stresses the need for establishing a European Partnership for Personalised Medicine. Already a lot has been achieved by a large number of international, pan-European, national as well as regional activities…
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Indian Organisation for Rare Diseases (IORD)’s World Rare Disease Day-2020 That’s the takeaway from IORD conference on ‘Raising the Awareness: Prevention of Rare Diseases’ in Hyderabad, India that summed up the World Rare Disease Day-2020 event. Doctors, survivors, expert speakers, healthcare staff, patients’ organisations, RD patients, researchers, policymakers, RD volunteers, parents and students took part…
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