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Rare Diseases Day 2021
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 to wish everyone involved all the very best, we hope you have a very successful and enjoyable day.
You also still have time to raise awareness on the day, you could get involved via social media, talk to a friend or look to take part in an event. Events are organised around the globe this year find out what is happening in your area by visiting the Rare Disease Day Website.
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EURORDIS Black Pearl Awards
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Recognising the outstanding achievements and exceptional work of people making a difference for the rare disease community. The 10th edition of the EURORDIS Black Pearl Awards will take place fully online on 24th February 2021, from 17:00 CET.…
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CPMS new features webinar for ERN Euro-NMD Members/HCPs
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Dear ERN Members The EU Commission has organized a webinar on the new features of Clinical Patient Management Ssystem that will be of interest to all clinicians and panel managers dealing with CPMS. As promised, the software has been improved and the new features will be presented at this webinar that is being organized…
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Treat-NMD Expert Masterclass on Limb Girdle Muscular Dystrophy, 29th and 30th April 2021
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Treat-NMD (treat-nmd.org) is organising a virtual masterclass of LGMD in Europe, following the success of a first masterclass last September in the USA. It will take place online on the 29th and 30th April 2021 and will have speakers from all over Europe.
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IRDiRC announcement of two new Task Forces
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The International Rare Diseases Research Consortium (IRDiRC) has announced the opening of two new Task Forces: - “Shared Molecular Etiologies Underlying Multiple Rare Diseases” aiming to address and document the existing challenges in adapting the basket trial approach used in molecularly targeted oncology clinical trials to drugs targeting shared molecular etiologies underlying multiple rare diseases.
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World Duchenne Organization, together with the Duchenne Data Foundation, started their Duchenne Emergency & Capacity Building Program
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- The Duchenne Emergency & Capacity Building Program was set up by the World Duchenne Organization and Duchenne Data Foundation.
- It aims to support local communities through strategic global capacity building.
- It was first put into action to deliver medical equipment to Lebanon after the Beirut city…
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ERN Euro-NMD Expert Group for Guidelines Development
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The European Commission has started a Project that involves Euro-NMD for developing Guidelines for Neuromuscular Conditions. The purpose is to support the creation of two new guidelines and the update of 5 existing ones. A consortium of Spanish Academia institutions will support the ERNs during the process, providing methodological support and a methodologist expert will…
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