"Look, this is what my rare disease is about" - use our #PatientJourney document on #CervicalDystonia to quickly and easily explain to others your rare condition. Be it your employer, your doctor, your friends or the health insurance. Hear about Monika Benson's story: www.youtube.com/watch?v=1A2W...

"National Reference Networks" - Holm Graessner shares insights at our Scientific Symposium "European Healthcare for RND Patients", Oct 28, 12:20 CET. Registration (free of charge): https://f.mtr.cool/mpyqdaaqli Program: https://f.mtr.cool/qxrjzcwauh

Free #Webinar on #FrontotemporalDementia and #PPA - which stands for Primary Progressive Aphasia- today at 3 CEST with Alexa Häger on: "Social and Lifestyle Issues Related to FTD and PPA" - to register, please click here: t1p.de/z2aca Learn more on PPA with our short interview: tinyurl.com/3nrhcuh3

💻 Upcoming #webinar on “Social and Lifestyle Issues Related to FTD and PPA” 📅 30th September, 3:00 CEST 🗣️ Alexa Häger, University Hospital Aachen, Germany Sign up 👉 https://t1p.de/z2aca Joint with the European Reference Network for Rare Neuromuscular Diseases and @ean.org

#NewbornScreeningAwarenessMonth Learn more about newborn screening with @erdera.bsky.social #ScientificPill here: erdera.org/article/harm... ...and about newborn screening for #MetachromaticLeukodystrophy in our video interview here: www.youtube.com/watch?v=pd7m... #MLD #Leukodystrophy

💻 Upcoming #webinar on “Social and Lifestyle Issues Related to FTD and PPA” 📅 30th September, 3:00 CEST 🗣️ Alexa Häger, University Hospital Aachen, Germany Sign up 👉 https://t1p.de/z2aca Joint with the European Reference Network for Rare Neuromuscular Diseases and @ean.org

Have you already heard of @eurordis.bsky.social Lighthouse Concept? Curious to know what it is about? Then join our Symposium on October 28 at 9 CET and listen to Ines Hernando's talk to learn more about it. Registration (free of charge) and programme: www.ern-rnd.eu/annual-meeti...

💻Upcoming #webinar on “Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease” 📅23rd September, 3 CEST 🗣️P. Mihaylova & M. Kearney, Tallaght University Hospital Sign up👉https://t1p.de/3r6k3 Joint w/ the European Reference Network for Rare Neuromuscular Diseases and @ean.org

💻Upcoming #webinar on “Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease” 📅23rd September, 3 CEST 🗣️P. Mihaylova & M. Kearney, Tallaght University Hospital Sign up👉https://t1p.de/3r6k3 Joint w/ the European Reference Network for Rare Neuromuscular Diseases and @ean.org

Join our Symposium on European #Healthcare for Rare Neurological Diseases on October 28, 8:20-13:40 CET and learn more about cross-border access to highly specialized therapies. Register now for free: ec.europa.eu/eusurvey/run... Find the full agenda here: www.ern-rnd.eu/wp-content/u...

Join the 3rd Channelopathy Meeting on 23-25 September 2025, Tübingen (Germany) and online to learn and discuss current research issues around rare ion channel diseases and transporter disorders and share latest results. Registration & Agenda: ec.europa.eu/eusurvey/run...

"Just like Home" - Stefano Zancan will talk about this Program at Fondazione Telethon in our Scientific Symposium "European Healthcare for RND Patients" on October 28, 8:40 CET. Registration (free of charge): tinyurl.com/p8wrbucf Program: tinyurl.com/4zbdvuty

10 minutes with the Danish Queen - our ePAG John Gerbild talked to the Queen about how life is like with a rare diagnosis at the Nordic Rare Disease Summit in Copenhagen.

Our ePAGs Monika Benson and John Gerbild are attending this year's Nordic Rare Disease Summit in Copenhagen. One of the highlights is the "Patient Empowerment Gap", the largest Nordic rare disease patient empowerment survey ever conducted: nordicrarediseasesummit.org/the-patient-...

Interested in fetal surgery? Then join our Scientific Symposium "European Healthcare for RND Patients" on October 28! Jan Deprest from the ERN ERNICA will talk about "Fetal surgery as an ERN example" at 8:20 CET. Registration (free of charge): tinyurl.com/p8wrbucf Program: tinyurl.com/4zbdvuty

💻Upcoming #webinar on “Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease” 📅23rd September, 3 CEST 🗣️P. Mihaylova & M. Kearney, Tallaght University Hospital Sign up👉https://t1p.de/3r6k3 Joint w/ the European Reference Network for Rare Neuromuscular Diseases and @ean.org

💻Upcoming #webinar on “Neurological and Non-Neurological Aspects in Palliative Care of FTD and PPA Patients” 📅16th September, 3:00 CEST 🗣️Renate Wahl, University Hospital Aachen, Germany Sign up👉https://t1p.de/j8mlc Joint w/ the European Reference Network for Rare Neuromuscular Diseases and @ean.org

"But why can't you sit with your body twisted and the head facing on the computer?" This is what our ePAG Monika Benson, who is affected by #CervicalDystonia, got to hear from a health insurrance officer when trying to explain her condition years ago. youtu.be/1A2W4tfH39w

💻Upcoming #webinar on “Neurological and Non-Neurological Aspects in Palliative Care of FTD and PPA Patients” 📅16th September, 3:00 CEST 🗣️Renate Wahl, University Hospital Aachen, Germany Sign up👉https://t1p.de/j8mlc Joint w/ the European Reference Network for Rare Neuromuscular Diseases and @ean.org

European #Healthcare for Rare Neurological Diseases - that's the topic of this year's ERN-RND Scientific Symposium on October 28, 8:20-13:40 CET. Register now for free: ec.europa.eu/eusurvey/run... Find the full agenda here: www.ern-rnd.eu/wp-content/u...

💻Upcoming #webinar on “Neurological and Non-Neurological Aspects in Palliative Care of FTD and PPA Patients” 📅16th September, 3:00 CEST 🗣️Renate Wahl, University Hospital Aachen, Germany Sign up👉https://t1p.de/j8mlc Joint w/ the European Reference Network for Rare Neuromuscular Diseases and @ean.org

💡 ▶️ New video tutorial for patient representatives involved in the development of care pathways. Learn: ✅ What care pathways are ✅ JARDIN’s model ✅ The role of patient representatives at each stage of the process 🎥 Watch it here! ➡️ jardin-ern.eu/new/patient-... #RareDiseases #EU4Health #JARDIN

#DystoniaAwarenessMonth: Do you know our #PatientJourney for #CervicalDystonia? It is available in 13 EU languages and free to download! For example in Dutch: www.ern-rnd.eu/patientenrei... Hungarian: www.ern-rnd.eu/betegut-cerv... Spanish: www.ern-rnd.eu/patient-jour...

🚨 Explore the programme for the #BrainDays @ UNGA80! 🧠 From global R&I to #BrainHealth equity & #BrainCapital, speakers from across the world will converge on tangible actions for a brain-healthier future. 🔗 Join us in #NYC on 24–26 Sept: braincouncil.eu/programme-un...

FREE EPNS Educational webinar - Wed 8 October 5pm CET Registration now open! us02web.zoom.us/webinar/regi...

For some rare paediatric ataxias treatments do exist, but they are not always well-known. To accelerate diagnosis & therefore a faster treatment our member David Gomez has set up a #Treatabolome for Dominant Ataxias - a database for gene & variant specific treatments www.youtube.com/watch?v=8DkQ...

Get the latest news on #RareNeurologicalDiseases with our monthly newsletter - and don't miss our free webinars and many upcoming events: www.ern-rnd.eu?mailpoet_rou... #RareDisease #RareDiseases #HSP #Dystonia #HutingtonDisease #Ataxia #FriedreichAtaxia #Leukodystrophy #FrontotemporalDementia

💻 Upcoming #webinar on “Social and Lifestyle Issues Related to FTD and PPA” 📅 30th September, 3:00 CEST 🗣️ Alexa Häger, University Hospital Aachen, Germany Sign up 👉 https://t1p.de/z2aca Joint with the European Reference Network for Rare Neuromuscular Diseases and @ean.org

💻Upcoming #webinar on “Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease” 📅23rd September, 3 CEST 🗣️P. Mihaylova & M. Kearney, Tallaght University Hospital Sign up👉https://t1p.de/3r6k3 Joint w/ the European Reference Network for Rare Neuromuscular Diseases and @ean.org

Participate in the #EU4Health #Survey on current and future health priorities till September 30! The @ec.europa.eu is inviting interested stakeholders to share their views on future priorities, orientations and needs for the future of the EU4Health programme. hadea.ec.europa.eu/news/targete...

What's the status on European #healthcare for rare neurological diseases in #ERNs? Join our Symposium on October 28 online (free of charge): tinyurl.com/yc3yts72 Find the programme here: www.ern-rnd.eu/wp-content/u...

Join our free symposium on European Healthcare for RND patients!

Next FREE YEPNS Case Discussion! Join us for an interactive journey through three compelling paediatric neurology cases—from clarity to enigma. Register at: us02web.zoom.us/webinar/regi...

Stay ahead in #PaediatricNeurology by reading the #EPNS2025 Abstract Book to get quick insights into the latest research, treatments, and breakthroughs: epns-congress.com/wp-content/u...

💻Upcoming #webinar on “Neurological and Non-Neurological Aspects in Palliative Care of FTD and PPA Patients” 📅16th September, 3:00 CEST 🗣️Renate Wahl, University Hospital Aachen, Germany Sign up👉https://t1p.de/j8mlc Joint w/ the European Reference Network for Rare Neuromuscular Diseases and @ean.org

📢 Exciting news — the #ERDERA Networking Support Scheme is now open for applications! 👉 If you are working to advance research in #RareDiseases or rare cancers, this could be the funding opportunity you're looking for! 🔗 Find out more: https://loom.ly/CwIvcvM#ERDERA🔁 Repost: Help us spread this info!

Want to be actively involved in the activities of the YEPNS? Learn more - epns.info/young-epns-y... Join for FREE! - epns.info/young-epns-y...

Join our Scientific Symposium on "European Healthcare for RND Patients" on October 28 online! Free registration: us02web.zoom.us/webinar/regi... Find the programme here: www.ern-rnd.eu/wp-content/u... #HealthcareEU #Neurology #RareDisease #RareNeurologicalDisease #Symposium

Movement Disorders affect also children and therefore paediatric scales are needed - but which one to use when, what treatment in which frequency? A standardization is needed. Learn more in our interview with ERN-RND clinician Juan Dario Ortigoza Escobar www.youtube.com/watch?v=k46u...

We are delighted to announce that the application period for EPNS Visiting Teacher 2026 is now open! For more information visit: epns.info/epns-visitin...

#WorldBrainDay - There are many gaps in the European #Healthcare systems for rare neurological diseases - but if you could change only #OneThing to make it better, what would you choose? Find out what our clinicians, patient advocates and patient organizations would do!

One more day till #WorldBrainDay: "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?" This is what ERN-RND clinician Rebecca Schuele would change: https://f.mtr.cool/mqrhizkhjs #WorldBrainDay2025 #BrainHealth

22 July is #WorldBrainDay: "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?" This is what ERN-RND clinician Vassilis Constantinides would change: https://f.mtr.cool/kkmcrksprq #WorldBrainDay2025  #BrainHealth

5 more days till #WorldBrainDay: "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?" This is what ERN-RND clinician Jana Dominguez Carral from @sjdhospitalbarcelona.org#WorldBrainDay:would do:

#WorldBrainDay is coming up on July 22! "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?" This is what ERN-RND clinician David Gomez would change first: www.youtube.com/watch?v=ukLl... #WorldBrainDay2025

#WorldBrainDay is coming up on July 22! "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?" This is what our patient representative Ruth Blanco would change first: www.youtube.com/watch?v=-YWk...

July 22 is #WorldBrainDay! "If you could change only one thing in the health care system for rare neurological diseases to make it better what would you choose?" This is what we asked our network. ERN-RND clinician Julie Martinkova would change this:

Hospitality as core value for patients - this is what our patient representatives learned and experienced themselves about the @sjdhospitalbarcelona.org, when visiting this ERN-RND expert center. Read article: https://f.mtr.cool/utrdfmaoso

Hospitality as core value for patients - this is what our patient representatives learned and experienced themselves about the @sjdhospitalbarcelona.org, when visiting this ERN-RND expert center. Read article: https://f.mtr.cool/utrdfmaoso

#WorldBrainDay is coming up on July 22! "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?" This is what we asked our network. This is what our ERN-RND clinician Yury Seliverstov would change: youtu.be/fLyijvhkwpU