ERN-RND
@ern-rnd.bsky.social
European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients.
Free webinars: https://www.ern-rnd.eu/education-training/online-medical-education-for-rare-neurological-diseases/
Free webinars: https://www.ern-rnd.eu/education-training/online-medical-education-for-rare-neurological-diseases/
Pinned
Today we were at the “100 Years of Metachromatic Leukodystrophy” #conference in Tübingen.
In our workshop on the MLD Patient Journey, we received great feedback from patient representatives, organizations, and clinicians—and several patient reps even want to join us in co-creating journeys for MLD.
In our workshop on the MLD Patient Journey, we received great feedback from patient representatives, organizations, and clinicians—and several patient reps even want to join us in co-creating journeys for MLD.
💻 Upcoming #webinar on “Recent Advances in Episodic Ataxias”
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
November 17, 2025 at 9:02 AM
💻 Upcoming #webinar on “Recent Advances in Episodic Ataxias”
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
Today we were at the “100 Years of Metachromatic Leukodystrophy” #conference in Tübingen.
In our workshop on the MLD Patient Journey, we received great feedback from patient representatives, organizations, and clinicians—and several patient reps even want to join us in co-creating journeys for MLD.
In our workshop on the MLD Patient Journey, we received great feedback from patient representatives, organizations, and clinicians—and several patient reps even want to join us in co-creating journeys for MLD.
November 15, 2025 at 1:34 PM
Today we were at the “100 Years of Metachromatic Leukodystrophy” #conference in Tübingen.
In our workshop on the MLD Patient Journey, we received great feedback from patient representatives, organizations, and clinicians—and several patient reps even want to join us in co-creating journeys for MLD.
In our workshop on the MLD Patient Journey, we received great feedback from patient representatives, organizations, and clinicians—and several patient reps even want to join us in co-creating journeys for MLD.
💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
📅 9th December, 3:00 CET
🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary
Sign up 👉https://t1p.de/d825h
Joint with the @euronmd.bsky.social and @ean.org
📅 9th December, 3:00 CET
🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary
Sign up 👉https://t1p.de/d825h
Joint with the @euronmd.bsky.social and @ean.org
November 11, 2025 at 10:30 AM
💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
📅 9th December, 3:00 CET
🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary
Sign up 👉https://t1p.de/d825h
Joint with the @euronmd.bsky.social and @ean.org
📅 9th December, 3:00 CET
🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary
Sign up 👉https://t1p.de/d825h
Joint with the @euronmd.bsky.social and @ean.org
💻 Upcoming #webinar on “Recent Advances in Episodic Ataxias”
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
November 11, 2025 at 9:01 AM
💻 Upcoming #webinar on “Recent Advances in Episodic Ataxias”
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
Stay informed: Whether you’re a clinician, patient, carer, or patient representative, our ERN-RND #newsletter is your go-to source for the latest updates on Rare Neurological Diseases in Europe: www.ern-rnd.eu?mailpoet_rou...
#RareDisease #RareNeurologicalDisease #Neurology #RareNeurology
#RareDisease #RareNeurologicalDisease #Neurology #RareNeurology
November 6, 2025 at 3:27 PM
Stay informed: Whether you’re a clinician, patient, carer, or patient representative, our ERN-RND #newsletter is your go-to source for the latest updates on Rare Neurological Diseases in Europe: www.ern-rnd.eu?mailpoet_rou...
#RareDisease #RareNeurologicalDisease #Neurology #RareNeurology
#RareDisease #RareNeurologicalDisease #Neurology #RareNeurology
💻 Upcoming #webinar on “Fluid Biomarkers in Frontotemporal Dementia”
📅 2nd December, 3:00 CET
🗣️ Domenico Plantone, AOU - University Hospital Siena, Italy
Sign up 👉https://t1p.de/9hsbc
Joint with the @euronmd.bsky.social and @ean.org
📅 2nd December, 3:00 CET
🗣️ Domenico Plantone, AOU - University Hospital Siena, Italy
Sign up 👉https://t1p.de/9hsbc
Joint with the @euronmd.bsky.social and @ean.org
November 4, 2025 at 9:02 AM
💻 Upcoming #webinar on “Fluid Biomarkers in Frontotemporal Dementia”
📅 2nd December, 3:00 CET
🗣️ Domenico Plantone, AOU - University Hospital Siena, Italy
Sign up 👉https://t1p.de/9hsbc
Joint with the @euronmd.bsky.social and @ean.org
📅 2nd December, 3:00 CET
🗣️ Domenico Plantone, AOU - University Hospital Siena, Italy
Sign up 👉https://t1p.de/9hsbc
Joint with the @euronmd.bsky.social and @ean.org
💻#webinar on “Guidelines on the Assessment and Treatment of Neurogenic Urinary and Sexual Symptoms”
📅25th November, 3 CET
🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna
Sign up 👉 https://t1p.de/9cxi7
Joint with the @euronmd.bsky.social and @ean.org
📅25th November, 3 CET
🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna
Sign up 👉 https://t1p.de/9cxi7
Joint with the @euronmd.bsky.social and @ean.org
October 28, 2025 at 12:03 PM
💻#webinar on “Guidelines on the Assessment and Treatment of Neurogenic Urinary and Sexual Symptoms”
📅25th November, 3 CET
🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna
Sign up 👉 https://t1p.de/9cxi7
Joint with the @euronmd.bsky.social and @ean.org
📅25th November, 3 CET
🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna
Sign up 👉 https://t1p.de/9cxi7
Joint with the @euronmd.bsky.social and @ean.org
💻 Upcoming #webinar on “Recent Advances in Episodic Ataxias”
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
October 28, 2025 at 8:02 AM
💻 Upcoming #webinar on “Recent Advances in Episodic Ataxias”
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunp
Joint with the @euronmd.bsky.social and @ean.org
Welcome everyone to Day 2 of our Annual Meeting 2025! We just started into our Disease Group meetings of today.
October 27, 2025 at 8:24 AM
Welcome everyone to Day 2 of our Annual Meeting 2025! We just started into our Disease Group meetings of today.
#QuizNight: A great evening full of laughter, learning, and connection!
How much do you know about ERN-RND?
Do you know how many data sets were submitted to the ERN-RND registry in 2024?
How much do you know about ERN-RND?
Do you know how many data sets were submitted to the ERN-RND registry in 2024?
October 26, 2025 at 9:28 PM
#QuizNight: A great evening full of laughter, learning, and connection!
How much do you know about ERN-RND?
Do you know how many data sets were submitted to the ERN-RND registry in 2024?
How much do you know about ERN-RND?
Do you know how many data sets were submitted to the ERN-RND registry in 2024?
Patient advocate workshop guided by one key question: what needs our attention most in the RND community? Mental health support? Lack of knowledge and awareness? Tailored transitioning care in adolescence?
Many inspiring ideas and discussions! We’re excited to see how they’ll shape future projects!
Many inspiring ideas and discussions! We’re excited to see how they’ll shape future projects!
October 26, 2025 at 9:07 PM
Patient advocate workshop guided by one key question: what needs our attention most in the RND community? Mental health support? Lack of knowledge and awareness? Tailored transitioning care in adolescence?
Many inspiring ideas and discussions! We’re excited to see how they’ll shape future projects!
Many inspiring ideas and discussions! We’re excited to see how they’ll shape future projects!
Our Annual Meeting kicked off today with a productive Board Meeting, where we reviewed our achievements from the past 12 months, shared experiences, and discussed exciting new project ideas for the year ahead.
October 26, 2025 at 8:56 PM
Our Annual Meeting kicked off today with a productive Board Meeting, where we reviewed our achievements from the past 12 months, shared experiences, and discussed exciting new project ideas for the year ahead.
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
Registration: https://f.mtr.cool/mpyqdaaqli
Program: https://f.mtr.cool/qxrjzcwauh
Abstract: f.mtr.cool/gyblgukxvx
@euronmd.bsky.social
October 21, 2025 at 9:02 AM
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
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...
Learn more about the speakers and topics here: www.ern-rnd.eu/wp-content/u...
October 20, 2025 at 1:49 PM
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...
Learn more about the speakers and topics here: www.ern-rnd.eu/wp-content/u...
Reposted by ERN-RND
🔬 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
#RareDiseases #GenomicData #1MGenomes
ERDERA and the European Genomic Data Infrastructure project work together to strengthen rare disease data, diagnostics and research - ERDERA
Fruitful collaboration ahead
erdera.org
October 13, 2025 at 4:23 PM
🔬 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
#RareDiseases #GenomicData #1MGenomes
Reposted by ERN-RND
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
🔗 Access the report: https://loom.ly/zcpVZfg
👉 Find out more: https://loom.ly/afsfGWA
#ERDERA #RareDiseases
EMA concludes pilot to support repurposing of established medicines - ERDERA
Accelerating evidence-driven innovation to unlock fresh indications for established therapies.
loom.ly
October 15, 2025 at 10:21 AM
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
🔗 Access the report: https://loom.ly/zcpVZfg
👉 Find out more: https://loom.ly/afsfGWA
#ERDERA #RareDiseases
Reposted by ERN-RND
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
- YouTube
Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.
www.youtube.com
October 16, 2025 at 7:15 AM
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
Reposted by ERN-RND
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
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
October 14, 2025 at 7:00 AM
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
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
Reposted by ERN-RND
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
🔗 Register here: summit2025.ebrains.eu
October 18, 2025 at 11:01 AM
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
🔗 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
Registration: https://f.mtr.cool/mpyqdaaqli
Program: https://f.mtr.cool/qxrjzcwauh
Abstract: f.mtr.cool/gyblgukxvx
October 16, 2025 at 9:03 AM
"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
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
Registration: https://f.mtr.cool/xjwsmnhdbu
Program: https://f.mtr.cool/wdrklamqcs
Abstract: https://f.mtr.cool/gyblgukxvx
@euronmd.bsky.social
October 14, 2025 at 2:25 PM
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
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
Registration (free of charge): t1p.de/k7tec
Program: t1p.de/u62ba
Abstract: tinyurl.com/y7yx8e5v
October 9, 2025 at 8:56 AM
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
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...
October 7, 2025 at 4:10 PM
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
Registration : https://f.mtr.cool/gaopxhezhj
Program: https://f.mtr.cool/usfnrgxwhx
@ernmetabern.bsky.social
@euronmd.bsky.social
October 7, 2025 at 1:33 PM
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
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
Registration (free of charge): https://f.mtr.cool/icvnhnnvbw
Program: https://f.mtr.cool/cepqpeugjx
@euronmd.bsky.social
#KrabbeDisease
October 7, 2025 at 1:21 PM
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
Registration (free of charge): https://f.mtr.cool/icvnhnnvbw
Program: https://f.mtr.cool/cepqpeugjx
@euronmd.bsky.social
#KrabbeDisease