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ERN-RND Disease Knowledge
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ERN-RND Clinical exchange program
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ERN-RND
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ERNcare4Ua
Our health care providers, particularly those located in the countries currently receiving large numbers of refugees, are ready to help Ukrainian patients with rare 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. You can also find the patient journey map for people living with cervical dystonia.
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The patient journey on dystonia has been published in Benson et al. (2022).
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WEBINARS
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Upcoming joint webinars by ERN-RND, EURO-NMD, EAN until the end of the year:
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05.07.2022 | ‘Young onset Parkinson’s disease - What is the difference?’ by Bart Post, Radboud University Medical Center, Nijmegen, the Netherlands. 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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13.09.2022 | ‘Vanishing white matter’ by Marjo van der Knaap, Amsterdam University Medical Center, the Netherlands. SIGN UP here
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20.09.2022 |’Tau-targeting Therapies: Where are we heading to?’ by Günter Höglinger, Hannover Medical School, Germany. SIGN UP here
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27.09.2022 | ‘Clinical and genetic predictors of subthalamic nucleus deep brain stimulation in Parkinson’s disease’ by Daniel Weiß, Hertie Institute for Clinical Brain Research, University of Tübingen, Germany. SIGN UP here
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04.10.2022 | ‘CACNA1A-related disorders: clinical presentation and therapeutic options’, by Elisabetta Indelicatto, Medical University Innsbruck, Austria, SIGN UP here
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11.10.2022 | ‘Krabbe disease – natural history and treatment options’ by Ingeborg Krägeloh-Mann and Samuel Gröschel, University Hospital Tübingen, Germany. SIGN UP here
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18.10.2022 | ‘DBS in Dystonia – Targets, programming and therapeutic challenges’ by Philipp Capetian, University Hospital Würzburg, Germany. SIGN UP here
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25.10.2022 | ‘VPS13A and XK bulk lipid transfer diseases (formerly the now obsolete Levine-Critchley syndrome)’ by Adrian Danek, University Hospital Munich, Germany. SIGN UP here
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08.11.2022 | ‘When is it appropriate to suspect a metabolic disorder in a child with chorea?’ by Juan Dario Ortigoza, Sant Joan de Déu, Barcelona, Spain. SIGN UP here
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08.11.2022 | ‘Telerehabilitation in RND: an update’ by Luigi Lavorgna, University Luigi Vanvitelli, Neaples, Italy. SIGN UP here
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22.11.2022 | ‘Use of Biomarkers to monitor the presymptomatic phase of Genetic FTD: research advances for clinical trial readiness’ by Dario Saracino and Harro Seelaar, Brain and Spine Institute, Paris, France; Erasmus MC- Rotterdam, the Netherlands. SIGN UP here
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29.11.2022 | ‘DBS in acquired Dystonia’ by Anne Koy, University Hospital Cologne, Germany. SIGN UP here
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06.12.2022 | ‘Update in synuclein PET tracer development’ by Johannes Levin, University Hospital Munich, Germany. SIGN UP here
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It's not too late to register for tomorrow's webinar!
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Call 4 new ePAG Advocates | Recruitment period: 25th of May to 31st of July 2022
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Are you interested in designating a patient representative to get involved in the European Reference Networks (ERNs) as an ePAG advocate? This might be your chance to make the voice of your patient community heard at the European level. Don’t miss it!
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At the moment, we specially encourage applications from:
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- Patient organisations from Eastern and Northern European countries;
- Patient organisations covering the disease areas included in this list.
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For more information on ERNs and the role of ePAG advocates you may watch this video and read this short guide.
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If you want information on the specific requirements for Patients Organisations to apply, the required skills and experience for candidates and the application process, please contact lenja.wiehe@eurordis.org
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TRAINING
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ERN-RND Short Exchange Programme: call for applications! Programme will run until end of 2022
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Healthcare professionals such as clinicians, nurses, physiotherapists, etc. who are affiliated to ERN institutions (Full Members or Affiliated Partners) can currently apply for interregional or international exchange. Their secondment to an ERN expert center other than their home institution will emphasise a clinical focus and aims to share, spread and broaden knowledge and to strengthen collaborations. Participants of the Short Exchange Programme are supported in administrative and financial issues and undertake an exchange of up to six weeks.
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Exchanges can be undertaken until December 2022
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Hybrid Course ” Current challenges of semiology in pediatric neurology”
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Vall d’Hebron, Barcelona, Spain
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Quality assurance, variant interpretation and data management in the NGS diagnostics era
For more information and to register, please visit the website.
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ERICA
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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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EVENTS
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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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PARTNER ORGANISATIONS
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EACD has set-up an Advocacy Group for Ukraine. It aims to bring together people, information, resources and support for children with disabilities from Ukraine. This contains among other providing information for families on support available in different European countries and Co-ordinating delivery of equipment. For more information, please follow the links below.
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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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