#ECRD2024 started today! If you are registered, check out our poster on "Cross-border healthcare in ERN-RND". Also available as video presentation! https://lnkd.in/ebgpRA-H #eposters
ERN-RND, European Reference Network for Rare Neurological Diseases
Hospitals and Health Care
Improve diagnosis, treatment and care of people affected by rare neurological diseases in Europe.
About us
The European Reference Network for Rare Neurological Diseases (ERN-RND) is a virtual network of 32 European expert hospitals in 13 EU member states working together to improve diagnosis, treatment and care of people affected by rare neurological diseases. It is coordinated by the University Hospital Tübingen, Germany. We currently cover the following disease groups: - cerebellar ataxias and hereditary spastic paraplegias, - choreas & huntington’s disease, - dystonias/paroxysmal disorders/neurodegeneration with brain iron accumulation, - leukodystrophies, - frontotemporal dementia and - atypical parkinsonian syndromes Our members include clinicians, researchers as well as patients to ensure that the patient voice is heard in everything we do. Our work is based on three important pillars: 1. Clinical Patient Management System (CPMS), 2. Knowledge generation and sharing and 3. European expert centres The CPMS is an online secure platform our clinicians across Europe use to discuss patient cases allowing the flow information to travel without having the patient move from the comfort of their home. Multidisciplinary panels of expert are convened in order to provide holistic advice. Moving on to our second pillar, members of the ERN-RND work together to produce knowledge in an effort to support clinicians in finding diagnosis and treatments in addition to helping patients and their families find the information they need and understand their clinical condition. Finally, ERN-RND is made up of healthcare centres which have been carefully selected and are experts in the different rare neurological disease groups we cover. You can also find us on Twitter, Facebook and YouTube.
- Website
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http://www.ern-rnd.eu
External link for ERN-RND, European Reference Network for Rare Neurological Diseases
- Industry
- Hospitals and Health Care
- Company size
- 51-200 employees
- Headquarters
- Tübingen
- Type
- Nonprofit
- Specialties
- rare diseases, neurological diseases, movement disorders, Cross-border healthcare, Standards of care, Clinical research, Neurology, eHealth, and Telemedicine
Locations
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Primary
Get directions
Tübingen, DE
Employees at ERN-RND, European Reference Network for Rare Neurological Diseases
Updates
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Stay updated about activities and events on #RareNeurologicalDiseases in the #EU with our monthly #newsletter: https://lnkd.in/ezXK2bUQ #neurology #ernRND #RND #RareDiseases
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ERN-RND, European Reference Network for Rare Neurological Diseases reposted this
Exciting News for all 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐄𝐱𝐩𝐞𝐫𝐭𝐬 📢 Our very own Franz Schaefer and Jose Ramírez García have contributed a #MOOC for the course "Health data ethics & regulatory frameworks in rare disease research” 🎉 It is designed for anyone interested in health data research and #RareDiseases, such as undergraduates, PhD students, healthcare professionals, researchers, and enthusiasts keen on understanding ethics and regulatory frameworks in this field 🔬 📖 Find 𝐦𝐨𝐫𝐞 𝐈𝐧𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧 & 𝐭𝐡𝐞 𝐑𝐞𝐠𝐢𝐬𝐭𝐫𝐚𝐭𝐢𝐨𝐧 right here: 🔗 https://lnkd.in/eEpwxzcp ERN Skin ERN BOND ERN ERNICA ERN ITHACA ERN-RITA ERN RARE-LIVER ERN CRANIO Endo-ERN - European Reference Network ERN EpiCARE - Rare and Complex Epilepsies EURACAN EURO-NMD European Reference Network for Rare Neuromuscular Diseases ERN eUROGEN ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) ERN-EYE ERN GENTURIS ERN GUARD-Heart ERN-LUNG - European Reference Network for rare respiratory diseases ERN ReCONNET ERN TransplantChild VASCERN, European Reference Network on Rare Multisystemic Vascular Diseases ERN-RND, European Reference Network for Rare Neurological Diseases MetabERN SIOP Europe, the European Society for Paediatric Oncology (SIOPE)
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Upcoming ERICA WP4 Webinar 3rd May 1pm CEST: c4c network expert advice, patient and public involvement, data standards. https://lnkd.in/eEM5YmeW
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We’re #hiring a project manager, full or part-time (70-100%). Application deadline: 31.05.2024. Interested? Please find the job description here (in German): https://lnkd.in/e2sUSGHf
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#Jobs: The Center for Rare Diseases in Tübingen is looking for a #ScientificOfficer, full or part-time. Part of the job is the #podcast "Code of Life". Application deadline: 17:05.2024. Interested? Check out the job description here (in German): https://lnkd.in/euVX9bdP
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ERN-RND, European Reference Network for Rare Neurological Diseases reposted this
➡️ Gene Therapy webinar series organized by #EURONMD in partnership with ERN-RND, European Reference Network for Rare Neurological Diseases, ERN EpiCARE - Rare and Complex Epilepsies & European Academy of Neurology. 📚 Episode 4: "N-of-1 to many personalized therapies" delivered by Terry Pirovolakis (Founder of CureSPG50 and Elpida Therapeutics) 📆 May 14th 2024 at 16:00 - 17:00 CEST ℹ️ More information & registration here 👉 https://lnkd.in/eke2c7gN
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Accelerate the standardisation of high-quality services across the EU, facilitate innovation and speed up scientific advances. Find out more about #ERNs and EU's new JARDIN Joint Action in this article! #JARDIN https://lnkd.in/e8VXxtTZ
Important lessons on healthcare from rare diseases
thelancet.com
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"Science Oscar": Our #ernRND member Thomas Gasser received the #BreakthroughPrize in the category "Life Sciences" for his research on #ParkinsonsDisease, together with Ellen Sidransky, Andrew Singleton and Richard J. Youle. The Breakthough Prize is considered the world’s largest science prize and is endowed with US$3 million. You can watch the official award ceremony on youtube on April 21, 20 CEST: https://lnkd.in/eSvFxFY7 More on Thomas Gasser's Research: https://lnkd.in/eK32xArH
🏆 „And the (Science) Oscar goes to“ – Wenn Hollywood Größen wie Robert Downey Jr., Glenn Close, Orlando Bloom, Bradley Cooper, Margot Robbie und viele weitere sich in Los Angeles versammeln, dann klingt es nach Oscarpreisverleihung! 👨🔬 👩🔬 Nur wurden am Wochenende nicht die besten Schauspieler in Los Angeles geehrt, sondern international renommierte Wissenschaftler und Wissenschaftlerinnen! Einer von Ihnen ist der Tübinger Parkinson-Forscher Prof. Dr. Thomas Gasser, der sich den mit 3 Millionen Dollar dotierten „Breakthrough Prize“ in der Kategorie „Life Sciences“ mit zwei US-Forschenden teilt. 🔬 Die oft als „#Oscars der #Wissenschaft“ bezeichnete Auszeichnung wird jährlich verliehen und ist der weltweit höchstdotierte internationale Wissenschaftspreis. Und die Preisverleihung steht den Oscars in nichts nach: So erhielt Prof. Gasser für seine bahnbrechende Entdeckung genetischer Risikofaktoren der #Parkinson-Erkrankung seinen #Award von niemand geringerem als Google Erfinder Sergey Brin und US Serienstar Rob Lowe. Beide würdigten den unermüdlichen Einsatz Gassers sowie seiner beiden Co-Preisträger Ellen sidransky und Andrew Singleton gegen die bislang noch unheilbare Nervenkrankheit sowie Richard J. Youle, der bereits 2021 einen #Breakthrough #Prize ebenfalls für Parkinsonforschung erhalten hat. Thomas Gasser forscht in leitender Funktion am Tübinger Standort des Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE) und ist Vorstandsvorsitzender des Hertie Institute for Clinical Brain Research an der Eberhard Karls Universität Tübingen. Er ist zudem Ärztlicher Direktor der Abteilung #Neurologie mit Schwerpunkt Neurodegenerative Erkrankungen am Universitätsklinikum Tübingen. ▶ Die Preisverleihung im Nachgang erleben? Dann schaltet am 21. April um 20 Uhr auf YouTube ein: https://lnkd.in/eSvFxFY7 Credits: Getty Images for Breakthrough Prize #LosAngeles #Celebrity #science #breakthroughprize
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Our latest #newsletter is out with an episode preview of the new #GeneTherapy webinar series, a children's book on #Adrenoleukodystrophy, information on national workshops for clinicians and upcoming events: https://lnkd.in/eyS6mHCK
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