ERN-RND – Page 14 – ERN-RND | European Reference Network on Rare Neurological Diseases

26-27 September | Nationale Konferenz zu Seltenen Erkrankungen (NAKSE)

Continue reading “26-27 September | Nationale Konferenz zu Seltenen Erkrankungen (NAKSE)”

23-27 September | International Summer School on Rare Disease Registries and FAIRification of Data

Continue reading “23-27 September | International Summer School on Rare Disease Registries and FAIRification of Data”

22-26 September | International Congress of Parkinson’s Disease & Movement Disorders

Continue reading “22-26 September | International Congress of Parkinson’s Disease & Movement Disorders”

25 September | International Ataxia Awareness Day

Continue reading “25 September | International Ataxia Awareness Day”

First call for new members to join existing 24 ERNs to be launched on 30 Sept. until 30 Nov.

Continue reading “First call for new members to join existing 24 ERNs to be launched on 30 Sept. until 30 Nov.”

French MSA patient organisation ARAMISE launches fundraising campaign

Continue reading “French MSA patient organisation ARAMISE launches fundraising campaign”

17-21 September | 13th European Paediatric Neurology Society (EPNS) Congress

Continue reading “17-21 September | 13th European Paediatric Neurology Society (EPNS) Congress”

20-21 September | 6th International Meeting on Spastic Paraparesis and Ataxia

Continue reading “20-21 September | 6th International Meeting on Spastic Paraparesis and Ataxia”

EBC, EFNA & EAN sent joint open letter to EU leaders

Continue reading “EBC, EFNA & EAN sent joint open letter to EU leaders”

16 September | Rare disease perspectives in Central – Eastern Europe

Continue reading “16 September | Rare disease perspectives in Central – Eastern Europe”

The Ataxia Global Initiatives website is live!

Continue reading “The Ataxia Global Initiatives website is live!”

Research News: “A clinical diagnostic algorithm for early onset cerebellar ataxia”

Continue reading “Research News: “A clinical diagnostic algorithm for early onset cerebellar ataxia””

Frequently Asked Questions for the ERN call for membership

Continue reading “Frequently Asked Questions for the ERN call for membership”

Additional documentation available to prepare applications for the 2019 ERN call for membership

Continue reading “Additional documentation available to prepare applications for the 2019 ERN call for membership”

Dystonia Awareness Month

Continue reading “Dystonia Awareness Month”

Interview with Daria Julkowska, coordinator of the European Joint Programme on Rare Diseases

Continue reading “Interview with Daria Julkowska, coordinator of the European Joint Programme on Rare Diseases”

European Commission launches Horizon Europe public consultation

Continue reading “European Commission launches Horizon Europe public consultation”

2019 call for membership to the existing ERNs to open soon

Continue reading “2019 call for membership to the existing ERNs to open soon”

22 July 2019 | World Brain Day

Continue reading “22 July 2019 | World Brain Day”

Report – European Academy of Neurology Congress 2019

Continue reading “Report – European Academy of Neurology Congress 2019”

Report – ERN-RND Annual Meeting 2019

Continue reading “Report – ERN-RND Annual Meeting 2019”

MSA Trust is accepting new and innovative project grant applications for Research Grant Round 2019

Continue reading “MSA Trust is accepting new and innovative project grant applications for Research Grant Round 2019”

10-12 July | 3rd EAN Task Force for Rare Neurological Diseases Teaching Course

Continue reading “10-12 July | 3rd EAN Task Force for Rare Neurological Diseases Teaching Course”

Two statements adopted on ERNs integration into the national health systems and cooperation with industry

Continue reading “Two statements adopted on ERNs integration into the national health systems and cooperation with industry”

First ERN Newsletter published by EU Commission’s DG Health

Continue reading “First ERN Newsletter published by EU Commission’s DG Health”

EJP-RD survey – please take 5min to complete it

Continue reading “EJP-RD survey – please take 5min to complete it”

29 June – 2 July 2019 | 5th Congress of the European Academy of Neurology

Continue reading “29 June – 2 July 2019 | 5th Congress of the European Academy of Neurology”

PETITION – Call for increased emphasis on brain research in the strategic plan for Horizon Europe

Continue reading “PETITION – Call for increased emphasis on brain research in the strategic plan for Horizon Europe”

29 June 2019 | Dystonia Today – special session at the EAN Congress 2019

Continue reading “29 June 2019 | Dystonia Today – special session at the EAN Congress 2019”

29 June | Rare Neurological Diseases for Understanding nervous system functions & dysfunctions, 5th Congress of the EAN 2019

Continue reading “29 June | Rare Neurological Diseases for Understanding nervous system functions & dysfunctions, 5th Congress of the EAN 2019”

Interview: “de neuroloog” with Holm Graessner about the neurological ERNs
March 6, 2025
What do centres of expertise gain from participating in an ERN?Graessner: An immediate advantage is when doctors at such a …read more »
MEP Meeting on Brain Health and Neurological Conditions
February 19, 2025
“Does current policy meet the needs of the rare neurology community” and “The impact of rare neurological conditions, through the …read more »
Solve-RD: Interview with coordinator Holm Graessner
February 12, 2025
Within the Solve-RD project, over 300 experts from different European countries and Canada re-analysed genome data from undiagnosed 6447 patients. …read more »

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Rare Disease Clinical Trial Network @rarediseasectn.bsky.social 11 hours

🧠 Rare Neurological Disease Registry 🧠

In celebration of #BrainAwarenessWeek, we’re highlighting Prof Sinéad Murphy (Tallaght University Hospital, Trinity College Dublin) who#BrainAwarenessWeek,RND registry. #RareNeurologicalDisease

📅 Register here: #RareNeurologicalDiseaseff=oddtdtcreator">www.eventbrite.ie/e/...
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ERN-RND @ern-rnd.bsky.social 3 days

Interested in #HuntingtonsDisease and #Chorea? Join our free #webinar on March 18 at 3 pm CET with Jean-Marc Burgunder! Register now: t1p.de/1lk3h
t1p.de/1lk3h
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ERN-RND @ern-rnd.bsky.social 4 days

Register for our WinterSchool with Bernhard Landwehrmeyer, who will be talking about Disease-Modifying Treatment Approaches/Trials in Huntington's Disease on March 12. In collaboration with the European Paediatric Neurology Society. Registration: https://t1p.de/eajix, Programme: https://t1p.de/jrxm9
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ERN-RND @ern-rnd.bsky.social 4 days

💻 Upcoming #webinar on “Psychiatric and Neuropsychological Assessments in Huntington’s Disease”
📅 1st April, 3:00 CEST
🗣️ Mayke Oosterloo, Maastricht University Medical Center, Netherlands
Sign up 👉 https://t1p.de/qtbc9
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ERN-RND @ern-rnd.bsky.social 4 days

Join our free #WinterSchool with Gabriella Paparella, who will be talking about the Treatment of #Ataxia - Rahabilitation based. In collaboration with the European Paediatric Neurology Society. Register now: https://t1p.de/eajix, Programme: https://t1p.de/jrxm9