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ERN-RND Disease Knowledge
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EJP Research Mobility Fellowships
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Solve-RD Workshop Navigating the sandbox
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EACD - Reha Tech 4 Child Survey
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We experienced technical issues with sending the newsletter at the beginning of the week and we apologize if you received the newsletter twice.
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ERN-RND
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ERNcare4Ua
Our health care providers, particularly those locasted in the countries currently receiving large numbers of refugees are ready to help Ukrainian patients with reare diseases for specific diagnostic procedures and treatment.
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This is a joint initiative of all 24 ERNs.
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On our website, you can find information on the six Disease Groups covered in ERN-RND. This month, we put some of our information on leukodystrophies in the spotlight. There's much more where this came from, so visit the Disease Knowledge page on our website!
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WEBINARS
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Upcoming joint webinars by ERN-RND, EURO-NMD, EAN:
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24.05.2022 | ‘Mitochondrial leukodystrophies’ by Anna Ardissone, IRCCS Foundation Neurological Institute "Carlo Besta", Milan, Italy. SIGN UP here
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21.06.2022 | ‘Biofluid biomarkers in atypical parkinsonism' by Per Svenningsson, Karolinska Institute, Department of Clinical Neuroscience, Stockholm, Sweden. SIGN UP here
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24.06.2022 | ‘Caring HD: the experience of the French National Reference Centre’ by Anne-Catherine Bachoud-Lévi & Katia Youssov, University Hospital Henri-Mondor, Paris, France. Sign up here.
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28.06.2022 | ‘Magnetic resonance imaging in the diagnostic assessment of cerebellar ataxias’ by Jennifer Faber, German Center for Neurodegenerative Disorders, Bonn, Germany. SIGN UP here
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12.07.2022 | ‘Importance of autopsies in leukodystrophies’ by Marianna Bugiani, Amsterdam University Medical Center, the Netherlands. SIGN UP here
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TRAINING
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ERN-RND Short Exchange Programme: call for applications!
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Healthcare professionals (clinicians, nurses, physiotherapists, etc.) affiliated to ERN institutions (Full Members or Affiliated Partners) can receive organizational and financial support for secondments with clinical focus lasting up to four weeks in ERN expert centres other than their home institution, supporting the sharing of knowledge and stimulating collaboration.
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More information about the programme can be found on our website.
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Exchanges are possible until December 2022.
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EJP RD funded ERN-Workshop‚ „Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases“, 4-5. July 2022, Bari, Italy
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Target audience: PhD students, post-doc researchers, senior scientists, young clinicians, investigators and academics affiliated to the ERNs, or willing to enter in the rare disease networks, expert in (or interested in learning more about) data science and machine learning techniques as applied to computational biology, toxicology profiling and PK/PD modelling in small populations."
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- Learn the application of web platforms for in-silico assessment of toxicity and learn the utility of a machine learning approach for the prediction of developmental toxicity of chemicals.
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- Learn what is needed for translational preclinical studies.
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- Learn the utility of PK/PD modelling and simulation in drug development for small populations.
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For more information and to register, please visit:
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FUNDING
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The 5th call for ERN Research Mobility Fellowships within the EJP RD will be launched on the 2. May 2022. It aims to provide funding for PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research outside their countries of residence. Deadline for submission of applications is: 13. June 2022. For more information visit: https://www.ejprarediseases.org/ern-research-mobility-fellowship/
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ERICA aims to promote collaborative inter- ERNs research projects. It is therefore crucial to have a centralised location to announce any new project and search for collaborators. A specific web page has been created for this purpose on the ERICA website Research Wall (Please note that the current page only contains examples).
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It provides basic information about the open calls for collaboration as well as contact details of the project PI. If you have any new inter- ERN project that you wish to advertise via this research wall, please fill the excel file with the project you wish to advertise and return to us.
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Please note that only inter- ERNs collaborative projects will be advertised via this research wall.
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The new projects will be regularly announced in the ERICA newsletters and twitter. Additionally, if you wish to receive updates directly by email, we kindly ask you to register here:
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The new projects will be regularly announced in the ERICA newsletters and twitter. Additionally, if you wish to receive updates directly by email, we kindly ask you to register here
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SOLVE-RD
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Solve-RD workshop: Navigating the Sandbox
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This combined webinar & workshop will provide an update on Solve-RD Sandbox services/functions, and also consider future plans, needs and possibilities. Intended participants include ERN data controllers/producers and DITF members. More information and link to registration here: https://solve-rd.eu/solve-rd-workshop-navigating-the-sandbox/.
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Events
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AGI Webinar: "Fluid biomarkers for trial readiness in ataxia"
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Date: 17 May, 5pm (CEST)
Venue: Online
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Ataxia Global Conference 2022
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The Ataxia Global Initiative (AGI) Conference will be held at Renaissance Dallas Addison Hotel in Dallas, Texas, USA on November 4-5, 2022, directly following the International Congress for Ataxia Research (ICAR). It brings together academia, industry as well as patient advocacy organisations and will focus on trial-readiness for ataxias.
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More information and registration here
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8th Congress of the European Academy of Neurology - Europe 2022
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Date: 25 - 28 June 2022
Venue: Vienna, Austria
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11th European Conference on rare disases and orphan products
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Date: 27 June - 01 July 2022
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34th Annual Meeting of the European Academy of Childood Disability
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PARTNER ORGANISATIONS
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The European Academy of Childhood Disability (EACD) would kindly like to invite professionals across Europe to participate in the RehaTech4Child Survey! The aim of the RehaTech4Child survey is to identify the digital technologies (e.g., robotic devices and treadmill systems, virtual reality and gaming systems, telehealth) that are used in clinical practices throughout Europe, and to know more about how rehabilitation professionals use or not use digital technologies in motor rehabilitation practices within the paediatric population. This knowledge would eventually help in designing the future technological developments based on the feedback from rehabilitation professionals. To identify today what is needed to create a better tomorrow for people with a childhood-onset disability and their families.
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NEWSLETTER
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Thank you for your support and take care.
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ERN-RND Coordination team
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