@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/
💻 Upcoming #webinar on “Palliative care for leukodystrophies and other rare neurological diseases (pediatric focus)”
📅 17th March, 3:00 CET
🗣️ Nicole Wolf, Amsterdam University Medical Centers, Netherlands
Sign up 👉https://t1p.de/xottw
Joint with the @euronmd.bsky.social and @ean.org
Want to stay informed about #RareNeurologicalDiseases? Don’t miss our newsletter for the latest updates, resources, and stories: www.ern-rnd.eu?mailpoet_rou...
Subscribe to our monthly #newsletter here: www.ern-rnd.eu/news/newslet...
Spring School “Next Generation Sequencing Diagnostics for Rare Neurological Diseases” - May 5–7, online and free of charge. Don't miss it and register now!
Registration: ec.europa.eu/eusurvey/run...
Programme: www.ern-rnd.eu/wp-content/u...
#NextGenerationSequencing #RareNeurologicalDiseases
💻 Upcoming #webinar on “Getting the Most Out of Physiotherapy in Dystonia”
📅 3rd March, 3:00 CET
🗣️Maarten Nijkrake, Radboud University Medical Center, Nijmegen, The Netherlands
Sign up 👉 https://t1p.de/ll1py
Joint with the @euronmd.bsky.social and @ean.org
#Physiotherapy #Dystonia #RareDisease
💻 Upcoming #webinar on “Getting the Most Out of Physiotherapy in Dystonia”
📅 3rd March, 3:00 CET
🗣️Maarten Nijkrake, Radboud University Medical Center, Nijmegen, The Netherlands
Sign up 👉 https://t1p.de/ll1py
Joint with the @euronmd.bsky.social and @ean.org
#Physiotherapy #Dystonia #RareDisease
@jardinjointaction.bsky.social @epnsnews.bsky.social @eurordis.bsky.social
Today is #RareDiseaseDay and this year it's all about #Equity Equity means more than awareness — it means real access. But that is often not given. A common every day example are "accessible" hotel rooms, as our patient advocate Lori Renna Linton is showing in this video
youtube.com/shorts/yle9R...
Our ePAGs John Gerbild & Nataliya Grigorova at the EURODIS Black Pearl Awards yesterday evening! Nataliya received the Holistic Care Award for her work in the Bulgarian Huntington Association - Congratulations, and keep up the good work! More about the association:
www.eurordis.org/black-pearl-...
💻 Upcoming #webinar on “Getting the Most Out of Physiotherapy in Dystonia”
📅 3rd March, 3:00 CET
🗣️Maarten Nijkrake, Radboud University Medical Center, Nijmegen, The Netherlands
Sign up 👉 https://t1p.de/ll1py
Joint with the @euronmd.bsky.social and @ean.org
#Physiotherapy #Dystonia #RareDisease
💻 Upcoming #webinar on “Palliative care for leukodystrophies and other rare neurological diseases (pediatric focus)”
📅 17th March, 3:00 CET
🗣️ Nicole Wolf, Amsterdam University Medical Centers, Netherlands
Sign up 👉https://t1p.de/xottw
Joint with the @euronmd.bsky.social and @ean.org
Myoclonus Dystonia often begins in childhood, yet it’s frequently mistaken for more common conditions like cerebral palsy. This misdiagnosis can delay accurate answers and effective care for years.
Learn more about the condition in our video interview with Belén Dueñas Pérez. youtu.be/HgpHRkNAwaQ
💻 Upcoming #webinar on “Getting the Most Out of Physiotherapy in Dystonia”
📅 3rd March, 3:00 CET
🗣️Maarten Nijkrake, Radboud University Medical Center, Nijmegen, The Netherlands
Sign up 👉 https://t1p.de/ll1py
Joint with the @euronmd.bsky.social and @ean.org
#Physiotherapy #Dystonia #RareDisease
POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP
Sign up 👉https://t1p.de/5nef2
Joint with the @euronmd.bsky.social and @ean.org
POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP
Sign up 👉https://t1p.de/5nef2
Joint with the @euronmd.bsky.social and @ean.org
POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP
Sign up 👉https://t1p.de/5nef2
Joint with the @euronmd.bsky.social and @ean.org
POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP
Sign up 👉https://t1p.de/5nef2
Joint with the @euronmd.bsky.social and @ean.org
⚠️Updated time! Now at 1 PM CET
💻 Upcoming #webinar on “The Importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
📅 9th December
🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary
Sign up 👉https://t1p.de/d825h
Joint with the @euronmd.bsky.social and @ean.org
Young EPNS (YEPNS) December Highlights in pediatric neurology: Diagnosis of multiple sclerosis!
#yepns #epns #pediatricneurology #pediatricneurologyliterature #ms #multiplesclerosis
STILL TIME TO REGISTER - Next FREE EPNS Educational Webinar! Wednesday, 10 December 2025, 17:00 CET
Topic: Approach of an Acute Motor Disorder
Register at -https://us02web.zoom.us/webinar/register/WN_Do6A224CREOj3_YsZu2QSg
FREE EPNS WEBINAR: CLIMATE CHANGE
Open to all.
Wed 18 Feb 2026 5PMCET
Paediatric Neurology in the Anthropocene: Clinical perspectives in a changing climate
Register us02web.zoom.us/webinar/register/WN_R7B23GXoRpGwwDBtwYXvig#/registration
www.epns.info/epns-climate-change-webinar/
Meet our EPNS Fellows!
Dr Marie Rohlenová from Czech Rep went to the Raymond Poincaré hospital in Garches, France in 2025
To read more about Marie's fellowship experience visit - www.epns.info/epns-fellows...
To join the EPNS visit - www.epns.info/become.../ne...
It's today! Join the live stream here: www.brains4brain.eu/eu-activitie...
⚠️Updated time! Now at 1 PM CET
💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
📅 9th December
🗣️ 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 “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
📅 9th December
⚠️Updated time: now at 1 PM CET.
🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary
Sign up 👉https://t1p.de/d825h
Joint with the @euronmd.bsky.social and @ean.org
One last time #RareNeurologicalDisease news and events in 2025! Stay up to date with the latest developments in rare neurological disorders — including #HuntingtonDisease, #HSP, #Dystonia, #MSA, #Leukodystrophies, #FrontotemporalDementia — with our monthly newsletter: https://f.mtr.cool/nvtixiqcex
Our coordinator Holm Graessner is participating in two panels on Day 1:
- Fostering EU Leadership in Clinical Trials for Rare Diseases (12:45-14:00 CET)
- Creating Comprehensive Rare Disease Infrastructure Clusters for Research, Innovation and Care (15:10-16:25 CET)
Join us for this "High Level Meeting on a European Innovation and Care Ecosystem for Rare and Complex Diseases" on December 9-12, 2025 - remotely. More information: www.brains4brain.eu/eu-activitie...
The flyers are a result of two caregiver surveys that showed how deeply these crises impact daily life. The next step is to create clinical recommendations.
To learn more on this project, watch our video interview with our member Jana Carral Dominguez here: www.youtube.com/watch?v=tnd1...
The flyers are available in 5 different languages. Find them all here: www.ern-rnd.eu/disease-know...
