ERN-RND

Join Till Voigtländer for "Overview and First Results of the JARDIN Project " at our Symposium "European Healthcare for RND Patients", Oct 28 12:00 CET.
Registration: https://f.mtr.cool/mpyqdaaqli
Program: https://f.mtr.cool/qxrjzcwauh
Abstract: f.mtr.cool/gyblgukxvx
@euronmd.bsky.social

One week to go for "European #Healthcare for RND Patients" - our Scientific #Symposium on October 28! Join us and register now for online participation - #free of charge: us02web.zoom.us/webinar/regi...

Learn more about the speakers and topics here: www.ern-rnd.eu/wp-content/u...

🔬 Exciting news: ERDERA joins forces with the European Genomic Data Infrastructure project (GDI) to advance rare disease research and diagnosis across Europe. Launching 14 Oct in Paris. 🌍 👉 Read more: https://loom.ly/7lthRbQ
#RareDiseases #GenomicData #1MGenomes

EMA concludes pilot to support repurposing of established medicines - ERDERA Accelerating evidence-driven innovation to unlock fresh indications for established therapies.

Regulatory news | 🗞️ The EMA and EU partners have released the final report of the EU Repurposing Pilot, supporting new uses for off-patent medicines in rare diseases and paediatric care.
🔗 Access the report: https://loom.ly/zcpVZfg
👉 Find out more: https://loom.ly/afsfGWA
#ERDERA #RareDiseases

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

What are European Reference Networks (ERNs) and what is their role in the rare disease ecosystem?💡In ERDERA, ERNs are central to our mission, acting as gateways to clinicians and patients across Europe 👀 https://loom.ly/FCHBS38

Start your journey toward becoming a certified Ambassador for Neurology and Brain Health!🧠

Applications are NOW OPEN for the third edition of the EAN Advocacy Training Programme!

➡️More info on the programme, eligibility, and application: buff.ly/CxmJCr3

Join Europe’s leading minds in neuroscience, innovation, and policy for the #EBRAINSSummit2025 – Transforming Brain Research and Medicine – live in Brussels on 8-11 December!

🔗 Register here: summit2025.ebrains.eu

"MLD Treatment Eligibility - Pitch and Live Case Discussion". Nicole Wolf shares insights at our Symposium "European Healthcare for RND Patients", Oct 28 11:30 CET.
Registration: https://f.mtr.cool/mpyqdaaqli
Program: https://f.mtr.cool/qxrjzcwauh
Abstract: f.mtr.cool/gyblgukxvx

Join us to learn about "National Support of ERN Members" with Pavla Doležalová at our Symposium "European Healthcare for RND Patients", Oct 28, 13:00 CET.
Registration: https://f.mtr.cool/xjwsmnhdbu
Program: https://f.mtr.cool/wdrklamqcs
Abstract: https://f.mtr.cool/gyblgukxvx
@euronmd.bsky.social

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

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...

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

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

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/

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

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

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

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

"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

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.

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

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

#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.