Ern-Rnd European Reference Network for Rare Neurological Diseases

25/09/2025

Want to learn more about "Epilepsy Surgery as an EpiCARE use case"? Hear from Alexis Arzimanoglou at our Symposium, October 28 at 10:40 CET.
Registration (free of charge): https://f.mtr.cool/xulcdajgrc
Program: https://f.mtr.cool/ntsyllfwlp

25/09/2025

Want to learn more about "Epilepsy Surgery as an EpiCARE use case"? Hear from Alexis Arzimanoglou at our Symposium, October 28 at 10:40 CET.
Registration (free of charge): https://t1p.de/k7tec
Program: https://t1p.de/u62ba

Epicare ERN

25/09/2025

September is for

Learn more about newborn screening with Erdera's here: https://erdera.org/article/harmonizing-european-newborn-screening/
..and about newborn screening in particular for in our video interview with Lucia Laugwitz here: https://www.youtube.com/watch?v=pd7m1OleYMA&list=PLkfH18L5YOWzrJwJnOUwQxQfMS-Cxv-SG&index=6

Metachromatic Leukodystrophy is a neurodegenerative disorder, that affects children at a very young age, leading to a premature death. In a pilot program (20...

25/09/2025

EACD 2025 Awards Celebration Event - October 7th

As part of EACD's mission and strategy to celebrate excellence in research for the benefit of people with childhood-onset disabilities, we are planning the EACD 2025 Award Celebration Event on Tuesday October 7th, 10:00-14:00h CEST (Brussels time).

Click here for more information on the event outline and to register for the event! https://eacd.org/event-5977607

EACD Members will receive in the next week their registration code to join the event for free!

24/09/2025

💻 Upcoming 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/9vht6

Joint with the European Reference Network for Rare Neuromuscular Diseases and the European Academy of Neurology

23/09/2025

Have you already heard of EURORDIS-Rare Diseases Europe 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): https://ec.europa.eu/eusurvey/runner/ERN-RND_ScientificSymposium2025_Registration

Agenda: https://www.ern-rnd.eu/annual-meeting-2025/

23/09/2025

webinar today with our Mary Kearney and our clinician Petya Mihaylova. Learn more about our patient journeys, that are free to download and available in many European languages!

💻 Upcoming on “Patient Journeys: Reliable Comprehensive documents which summarise a Rare Disease”
📅 23rd September, 3:00 CEST
🗣️ Petya Mihaylova and Mary Kearney, Tallaght University Hospital and Children's Health Ireland, Dublin, Ireland
Sign up 👉 https://t1p.de/wxovb
Joint with the European Reference Network for Rare Neuromuscular Diseases and the European Academy of Neurology

22/09/2025

💻 Upcoming on “Patient Journeys: Reliable Comprehensive documents which summarise a Rare Disease”
📅 23rd September, 3:00 CEST
🗣️ Petya Mihaylova and Mary Kearney, Tallaght University Hospital and Children's Health Ireland, Dublin, Ireland
Sign up 👉 https://t1p.de/wxovb
Joint with the European Reference Network for Rare Neuromuscular Diseases and the European Academy of Neurology

22/09/2025

Join our Symposium on European for Rare Neurological Diseases on October 28, 8:20-13:40 CET. Register now for free and participate online to learn more about cross-border access to highly specialized therapies for ultra-rare conditions (like EURORDIS-Rare Diseases Europe Lighthouse Concept), the integration of into National Healthcare Systems (Jardin Joint Action) and follow multidisciplinary case duscussions on , and surgery (Epicare ERN)

To participate please register (for free): https://ec.europa.eu/eusurvey/runner/ERN-RND_ScientificSymposium2025_Registration

Find the agenda here:https://www.ern-rnd.eu/wp-content/uploads/2025/07/Programme_Scientific_Symposium_2025.pdf

European Academy of Neurology EPNS - European Paediatric Neurology Society

18/09/2025

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.

Current cases are presented in a molecular therapeutic board and a poster session offers the opportunity to present your own projects and results.

Participation on-site and online is free of charge. Registration for Poster session is still possible.

Agenda & Registration: https://ec.europa.eu/eusurvey/runner/ChannelopathyMeeting2025

More information: https://treat-ion.de/events-english/

18/09/2025

Events 3rd Channelopathy Meeting From September 23-25, 2025, the 3rd International Channelopathy Meeting is taking place in Tübingen, Germany.  Scientists from all over the world come together to discuss current research issues around rare ion channel diseases and transporter disorders and share l...

18/09/2025

"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.

To participate please register (for free): https://ec.europa.eu/eusurvey/runner/ERN-RND_ScientificSymposium2025_Registration

Find the agenda here: fil:///C:/Users/AHFILIA1/Downloads/Programme_Scientific_Symposium_2025-3.pdf