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ABOUT US
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ERN-RND statement for patients
A statement for patients with rare neurological diseases during the COVID-19 pandemic has been written by ERN-RND members and disseminated via various online communication channels:
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“Over the past 3 months, hospitals and outpatient clinics all across Europe have undertaken all conceivable organizational measures not only to effectively treat patients with Covid19, but also protect other patients from infection with the corona virus SARS-CoV2.
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Particularly for patients with chronic rare disorders, regular appointments with their treating specialized physician may be crucial to maintain adequate treatment and to prevent sometimes irreversible further deterioration of the disease.
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Due to the protective measures, in most instances these appointments can now be made without major risk of infection.
If you or your relative have a disease that requires treatment, please contact your center and inquire about the local regulations for making an appointment with your treating physician.”
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Upcoming joint webinars by ERN-RND, EURO-NMD, EAN:
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- ERN-RND webinar, 9 July, 3-4pm CET, Environmental modifiers in Hereditary Spastic Paraplegia (neurorehabilitation focus), Pauline Lallemant-Dudek (APHP, Brain and Spine Institute (ICM) Paris, France). Sign up here.
- ERN-RND webinar,14 July, 3-4pm CET, Gait rehabilitation in people with Hereditary Spastic Paraplegia (neurorehabilitation focus) by Jorik Nonnekes (Radboudumc, Netherlands) & Respiratory physiotherapy in parkinson's plus syndromes (neurorehabilitation focus) by Martin Srp (Charles University, Czech Republic). Sign up here.
- ERN EURO-NMD webinar, 23 July, Introduction to MR Neurography, Olivier Scheidegger (Bern University Hospital/University of Bern, Switzerland). Sign up here.
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EJP RD Fellowship awarded
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EAN Coordinating Panel on Rare Neurological Diseases Business meeting
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- Introduction of the new management group of the EAN RND panel
- Annual report 2019 & action plan for 2020
- Topics proposal for the EAN Congress 2021 in Vienna
- ERN-RND update from Holm Graessner
- ERN EURO-NMD update from Teresinha Evangelista
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This was a fruitful meeting and ERN-RND is looking forward to working collaboratively with the panel!
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DISEASE KNOWLEDGE
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Disease Knowledge documents translated
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The following ERN-RND Disease Knowledge (DK) documents have been translated to German and are available on the DK webpages of the ERN-RND website:
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More Disease Knowledge documents translated to German, French and Spanish will be available on the ERN-RND website soon.
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New Disease Knowledge documents
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ATAXIA GLOBAL INITIATIVES
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SCA & ARCA Global Conference 2020
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Registration for the SCA & ARCA Global joint conference which will take place online from 19-21 October 2020 is now open! You can register here.
Abstract submission for posters is also open. The deadline for submission is 6 September 2020.
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NEUROLOGICAL ORGANISATIONS
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EFNA Brain Life Goals winners
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The European Huntington Association will use this grant to work further on HealthE-RND. Dystonia Europe will launch the Jump for Dystonia 2020 awareness digital campaign (the first very successful edition “Jump for dystonia” took place in 2015) to help increase awareness of dystonia, speed up diagnosis and access to treatment.
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EJP RD
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The training course is open to the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients representatives. It’s a great opportunity to learn more about registries which are key resources in order to increase timely and accurate diagnosis, improve patients management, tailor treatments, facilitate clinical trials, support healthcare planning and speed up research.
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The deadline for registration is 19 July 2020. The course and registration are free of charge.
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EVENTS
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14th European Paediatric Neurology Society Congress - call for abstracts
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Date: 1-5 June 2021
Event: EPNS Congress
Where: Glasgow UK
The theme is Precision in Child Neurology: Networks, Systems & Technology.
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- Neuromuscular Disease
- Epilepsy
- Movement Disorders
- Cerebral Palsy, Stroke & Acquired Brain Injury
- Neurogenetics
- Neuroimmunology
- Technology & App Fair
The EPNS Congress is an amazing chance to network & get up to date on the latest developments in Child Neurology, save the date!
Abstract submissions are open! Registration will open in November 2020.
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RECENT PUBLICATIONS
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- Michelangelo Mancuso, Massimiliano Filosto, Costanza Lamperti, Olimpia Musumeci, Filippo M Santorelli, Serenella Servidei, Enza M Valente, Massimo Zeviani, Gianluigi Mancardi, Gioacchino Tedeschi & Antonio Federico (ERN-RND member), (2020), “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey”, Neurological Sciences
- Adam P. Vogel, Michelle Magee, Reidenis Torres-Vega, Jacqueline Medrano-Montero, Melissa P. Cyngler, Megan Kruse, Sandra Rojas, Sebastian Contreras Cubillos, Tamara Canento, Fernanda Maldonado, Yaimee Vazquez-Mojena, Winfried Ilg, Roberto Rodríguez-Labrada, Luis Velázquez-Pérez, Matthis Synofzik (ERN-RND member), (2020), “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2”, Neurology
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SURVEYS
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Assessing the Member States’ rules on health data in the light of GDPR
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The European Commission has initiated a study that aims to examine in which manners the processing of personal health data is governed across the European Union (EU) and how this might affect the cross-border exchange of health data in the EU in light of the GDPR. The study is executed by the EUHealthSupport consortium.
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As part of this study the European Commission would like to invite you to participate in an online survey, aimed at collecting the views of experts and organisations representing the wide range of stakeholders, including patients, care providers, industry, public bodies and researchers. The results of the study will be used to identify possible future actions to be developed at EU level, such as new legislation or codes of conduct for health data sharing for research or policy purposes, also in light of the current COVID-19 pandemic.
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In total, the survey will take approximately between 10 and 15 minutes to complete. It will be possible to respond till Sunday 5 July 2020.
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Global survey to understand the impact of COVID-19 on running clinical trials
The Good Clinical Trials Collaborative invites you to take part in a global survey to understand the impact of COVID-19 on running clinical trials. Your feedback will contribute to the development of new guidelines that support a more efficient regulatory environment for clinical trials, allowing researchers to efficiently conduct the trials that are needed to improve patient care.
The survey will be open for 6 weeks, closing at 5pm (BST) on Monday 20 July 2020.
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The impact of COVID 19 for people living with a Rare Disease
The “COVID-19 Clinical Management Support System” organised a webinar on “The impact of COVID 19 for people living with a Rare Disease” in collaboration with EURORDIS which took place on 9 June. The survey was presented by Inés Hernando (ERN and Healthcare Director, EURORDIS) and the outcomes of the survey as well as the results breakdown by ERN disease grouping were discussed by Sandra Courbier (Social Research Director, EURORDIS).
The video recording of the webinar and the presentations are available on the website of the European Commission here.
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NEWSLETTER
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Thank you for your support.
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ERN-RND Coordination team
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