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ERN-RND @ern-rnd.bsky.social · 4h

Learn from Martin Reich in "Deep Brain Stimulation - Pitch and Live Case Discussion" at the Scientific Symposium "European Healthcare for RND Patients", Oct 28, 11:00 CET.

Registration (free of charge): t1p.de/k7tec
Program: t1p.de/u62ba
Abstract: tinyurl.com/y7yx8e5v

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ERN-RND @ern-rnd.bsky.social · 1d

It's time for #RareNeurologicalDisease #news: this month with a video #interview on developing a guideline on NKX1-2-related disorders, 3 updated #PatientJourneys and a lot of surveys, workshops, congresses and symposia! Read our #newsletter here: www.ern-rnd.eu?mailpoet_rou...

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ERN-RND @ern-rnd.bsky.social · 2d

Curious about "Development and Implementation of ERN Care Pathways"? Join Birutė Tumienė at our Symposium "European Healthcare for RND Patients" Oct 28, 12:40 CET.

Registration : https://f.mtr.cool/gaopxhezhj
Program: https://f.mtr.cool/usfnrgxwhx

@ernmetabern.bsky.social
@euronmd.bsky.social

ERN-RND @ern-rnd.bsky.social · 2d

Don’t miss the "Krabbe Disease Expert Panel"- Pascal Martin shares expertise at the Scientific Symposium "European Healthcare for RND Patients", Oct 28, 9:20 CET.

Registration (free of charge): https://f.mtr.cool/icvnhnnvbw
Program: https://f.mtr.cool/cepqpeugjx
@euronmd.bsky.social
#KrabbeDisease

Reposted by ERN-RND

European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social · 9d

Join the next EPNS Journal Club

Wed 22 Oct 2025 at 17:00 CET

Differential diagnosis and comparison of diagnostic algorithms in children and adolescents with autoimmune encephalitis in Spain

Free & open to all
Register us02web.zoom.us/webinar/regi...
Article: pubmed.ncbi.nlm.nih.gov/39706634/

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Reposted by ERN-RND

European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social · 7d

Still time to register for the next FREE EPNS webinar!
Wed 8 Oct 2025 | 17:00 CET
Topic: Neurological complications of paediatric cancer & treatment
Live on Zoom | Open to all!
Register free: us02web.zoom.us/webinar/regi...
#EPNS #PaediatricNeurology

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ERN-RND @ern-rnd.bsky.social · 3d

Don't miss our Symposium on "European Healthcare for RND Patients" - with insights from the #ERNs ERN-RND, Epicare & ERNICA as well as from @jardinjointaction.bsky.social, @eurordis.bsky.social on October 28, starting at 8:20 CET.

Registration: tinyurl.com/p8wrbucf

Agenda: tinyurl.com/49yhy4rx

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ERN-RND @ern-rnd.bsky.social · 8d

The patient journey is free to download and available in many different languages: www.ern-rnd.eu/disease-know...

ERN-RND @ern-rnd.bsky.social · 8d

"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...

ERN-RND: Patient Journey Cervical Dystonia - Why we need one (Health Insurance)

YouTube video by ERN-RND

www.youtube.com

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ERN-RND @ern-rnd.bsky.social · 9d

"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

ERN-RND @ern-rnd.bsky.social · 9d

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

ERN-RND Clinical Practice for Primary Progressive Aphasia (PPA) - Interview with Robert Rusina

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

tinyurl.com

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ERN-RND @ern-rnd.bsky.social · 10d

💻 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

ERN-RND @ern-rnd.bsky.social · 14d

#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

ERN-RND: The Importance of Newborn Screening for Metachromatic Leukodystrophy (MLD)

YouTube video by ERN-RND

www.youtube.com

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ERN-RND @ern-rnd.bsky.social · 15d

💻 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

ERN-RND @ern-rnd.bsky.social · 16d

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...

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ERN-RND @ern-rnd.bsky.social · 16d

💻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

ERN-RND @ern-rnd.bsky.social · 17d

💻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

ERN-RND @ern-rnd.bsky.social · 17d

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...

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ERN-RND @ern-rnd.bsky.social · 21d

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...

ERN-RND @ern-rnd.bsky.social · 21d

"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

ERN-RND @ern-rnd.bsky.social · 21d

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.

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ERN-RND @ern-rnd.bsky.social · 22d

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-...

ERN-RND @ern-rnd.bsky.social · 23d

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

ERN-RND @ern-rnd.bsky.social · 23d

💻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

ERN-RND @ern-rnd.bsky.social · 23d

💻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

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