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December 2021
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ERN-ITHACA Projects
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ERN-ITHACA Board
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Thank you very much to all of our speakers and participants, both online and on-site, for these very rich and enthousiastic three days in Madrid. New members, new projects, new collaborations... We are looking forward to the five years to come!
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You can now find on our website, in the Members Area pages, the powerpoints of all workgroup presentations and expert talks. Also, we will soon upload the video recordings from the talks.
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Finally, to help us improve our next meetings, please share with us your thoughts on the Board in this anonymous form. Your feedback is important to us!
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APOGeE Text-book: Campaign for authors
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The APOGeE Project has greatly moved forward since we are now happy to count a new Project Manager in our team, Nicholas Szeto, who will be in charge of coordinating the implementation of the text-book.
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Our campaign to search for authors to join the project has now started. If you want to be involved, please have a look at this provisional table of contents and fill in this online form to indicate the chapter(s) you would like to work on. We encourage you to share these links around you, to professors or researchers that might be interested.
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To learn more about the project, please visit our website at this page or write directly to Nicholas (nicholas.szeto@aphp.fr).
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International News
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First UN resolution on persons living with a rare disease
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On 16 December, the UN General Assembly has adopted by consensus the UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families. This is the first ever UN text to give full visibility to the over 300 million persons living with a rare disease worldwide and calls for action to address the specific challenges they faced (including health, access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society).
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News from EJP RD
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EJPRD: Joint Transnational Call 2022
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The European Joint Programme on Rare Diseases has announced mid December the official launch of the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.
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The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients
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EJPRD: ERN Workshop on contemporary outcome measures in neuromuscular diseases
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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 diseases is being organised by Prof. Sabrina Sacconi of University Hospital Nice.
The hybrid event (in-person on site and online by videoconference) will take place over two days on March 4th – 5th, 2022 at the University Hospital Nice, Pasteur 2 Hospital in Galet, Nice, France.
The training workshop is free of charge. The workshop will consist of both presentations by experts in the field of neuromuscular diseases as well as interactive panel discussions and quiz sessions to train participants in performing and interpreting various outcome measures.
Registration closes on January 10th, 2022 and those selected to participate from among the applicants will be informed by January 14th, 2022 of their selection.
More information here: https://www.ejprarediseases.org/event/contemporary-outcome-measures-in-neuromuscular-diseases/
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