European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients. Free webinars: https://xitter.cf/t.co/nowjhyNigm
Tübingen, Deutschland
Joined May 2018
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EPNS/EAN FREE JOINT Educational webinar - Wed 14 May 5pm CET Registration now open! -
us02web.zoom.us/webinar/regi…
Some impressions from today's film session at the neuropaedriatric department of the University Hospital Tübingen. Curious about what we did there? Then check back with us on Monday to find out!
What is a Patient Journey and how do you develop one? Our patient advocate Lori Renna Linton will give an insight on this at the EESC Conference "Towards an EU Action Plan on Rare Diseases" on April 10, 12:00 CEST. Register here: t1p.de/b165p
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"Knowledge travels, not the patient" - this is possible through European Reference Centers #ERNs!
So, what exactly do patients and clinics gain from ERNs? Find out more about #ERNs in this interview with our coordinator: ern-rnd.eu/interview-de-neur…
What is the use of Patient Registries? And how does data sharing in the #ERNs work? Our coordinator Holm Graessner will give an insight on this at the EESC Conference "Towards an EU Action Plan on Rare Diseases" on April 10, 4:30 pm CEST. Register here: eesc.europa.eu/en/agenda/our…
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Join us for training in Tanzania
Travel funding available for residents of Africa. loom.ly/ZI5nv-Q
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📣 Event Alert! On 10–11 April, key ERDERA partners will take the stage at the Polish Presidency of the Council of the EU Conference: Towards an EU Action Plan on Rare Diseases: National Plans and European Cooperation. 🔗View the programme and register: loom.ly/pD_Wy4U
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📑 Clinical Trial Identification Project 📑
Ms Sarah Forde (RDCTN) will present an overview of the Clinical Trial Identification Project, a vital initiative for improving trial accessibility. #ClinicalTrialAccess #RareDiseaseTrials 📅 Register here: eventbrite.ie/e/rare-disease…
ALT A slide with a photo of the speaker and the title of the talk
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New Moving Along issue: Phenomenology of tremor, the importance of GBA1 genetic testing and counseling in PD, and advancing EMST with machine learning, and more: loom.ly/9nA2oMM
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The #eshg2025 invites you to submit a Breaking Abstract for inclusion in the "Late Breaking Abstracts" Concurrent Session on Monday, May 26, 2025, 10:30-12:00 hrs CEST! Deadline: April 9, 2025, 23:59 CEST. For more information visit our website: 2025.eshg.org/abstracts/brea…
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Next EPNS FREE EdNucational webinar - Wed 9 April 5pm CET - Registration now open! -us02web.zoom.us/webinar/regi…
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📢 #EANPOTM March
Can a diabetes drug slow Parkinson’s? A phase 3 trial tested exenatide, a GLP-1 receptor agonist, for its potential disease-modifying effects in Parkinson’s. ➡️Despite promising preclinical data, no clinical benefit.
🔗Find more here: ow.ly/X5sv50Vm2jV
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#NewPublication: Proposal on patient involvement in clinical practice guidelines. sciencedirect.com/science/ar…
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🆕 New Patient Leaflets Available!
We now have leaflets about Primary sclerosing cholangitis (PSC) for Children and Teens in Polish.
👉 Check it out here: lnkd.in/enfwfz3N
#PatientCare
#HealthAwareness
#MedicalInfo
#PatientSupport
#HealthcareResources
#PolishResources
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People with Parkinson’s disease can be affected by a wide range of neuropsychiatric issues. Learn how to provide optimal care in this on-demand module. loom.ly/o-45wO4
