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/
💻 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?
How about a fun one: can you recognize the members of the coordination office from their childhood photos?
How much do you know about ERN-RND?
How about a fun one: can you recognize the members of the coordination office from their childhood photos?
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?
How about a fun one: can you recognize the members of the coordination office from their childhood photos?
How much do you know about ERN-RND?
How about a fun one: can you recognize the members of the coordination office from their childhood photos?
#QuizNight: A great evening full of laughter, learning, and connection!
How much do you know about ERN-RND?
Which EU countries aren't part of the network yet?
And a fun one: can you recognize the members of the coordination office from their childhood photos?
How much do you know about ERN-RND?
Which EU countries aren't part of the network yet?
And a fun one: can you recognize the members of the coordination office from their childhood photos?
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?
Which EU countries aren't part of the network yet?
And a fun one: can you recognize the members of the coordination office from their childhood photos?
How much do you know about ERN-RND?
Which EU countries aren't part of the network yet?
And a fun one: can you recognize the members of the coordination office from their childhood photos?
#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...
"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
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
Registration: tinyurl.com/p8wrbucf
Agenda: tinyurl.com/49yhy4rx
October 6, 2025 at 12:17 PM
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
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...
October 1, 2025 at 10:39 AM
The patient journey is free to download and available in many different languages: www.ern-rnd.eu/disease-know...
"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
Registration (free of charge): https://f.mtr.cool/mpyqdaaqli
Program: https://f.mtr.cool/qxrjzcwauh
September 30, 2025 at 9:30 AM
"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
Registration (free of charge): https://f.mtr.cool/mpyqdaaqli
Program: https://f.mtr.cool/qxrjzcwauh