Past Events – Page 5 – ERN-RND | European Reference Network on Rare Neurological Diseases

29 September 2020 | ERN-RND webinar “How can we develop and implement evidence based rehabilitation in rare disorders?”

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25 September | International Ataxia Awareness Day (IAAW)

17 September 2020 | EURO-NMD webinar “the basics of genetic approaches for NMDs – using DMD as a paradigm”

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12-16 September 2020 | MDS Virtual Congress

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15 September 2020 | ERN-RND webinar “A challenge in neurogenetics: Huntington disease in kids”

Continue reading “15 September 2020 | ERN-RND webinar “A challenge in neurogenetics: Huntington disease in kids””

11 September 2020 | EHDN’s Bridging Event 2020

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10 September 2020 | ERN-RND webinar “How to assess and manage spastic gait in rare diseases?”

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8 September 2020 | ERN-RND webinar “Semantic variant of primary progressive aphasia”

Continue reading “8 September 2020 | ERN-RND webinar “Semantic variant of primary progressive aphasia””

8 September 2020 | 4th EAN Task Force for Rare Neurological Diseases Teaching Course

Continue reading “8 September 2020 | 4th EAN Task Force for Rare Neurological Diseases Teaching Course”

1 December 2020 | ERN-RND webinar “Functional movement disorders: a diagnostic guide”

Continue reading “1 December 2020 | ERN-RND webinar “Functional movement disorders: a diagnostic guide””

22 July 2020 | World Brain Day

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11-15 July 2020 | (Virtual) 12th FENS Forum of Neuroscience

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14 July 2020 | ERN-RND webinar “Gait rehabilitation in people with Hereditary Spastic Paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes”

Continue reading “14 July 2020 | ERN-RND webinar “Gait rehabilitation in people with Hereditary Spastic Paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes””

9 July 2020 | ERN-RND webinar “Environmental modifiers in Hereditary Spastic Paraplegia”

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30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia”

Continue reading “30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia””

30 June 2020 | EFNA webinar “Where’s Neurology? Influencing Covid Recovery Planning, Programmes and Policies”

Continue reading “30 June 2020 | EFNA webinar “Where’s Neurology? Influencing Covid Recovery Planning, Programmes and Policies””

18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation”

Continue reading “18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation””

18 June 2020 | Webinar “A data strategy for the European Reference Networks”

Continue reading “18 June 2020 | Webinar “A data strategy for the European Reference Networks””

15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting

Continue reading “15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting”

16 June 2020 | Webinar “Advancing the rare disease research agenda”

Continue reading “16 June 2020 | Webinar “Advancing the rare disease research agenda””

6-9 June 2020 | ESHG 2020.2 – Live in your living room

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9 June 2020 | Webinar “The impact of COVID 19 for people living with a Rare Disease” by EC & EURORDIS

Continue reading “9 June 2020 | Webinar “The impact of COVID 19 for people living with a Rare Disease” by EC & EURORDIS”

23-26 May 2020 | 6th (Virtual) Congress of the European Academy of Neurology

Continue reading “23-26 May 2020 | 6th (Virtual) Congress of the European Academy of Neurology”

26 May 2020 | ERN-RND webinar “Primary progressive aphasia subtyping in clinical practice”

Continue reading “26 May 2020 | ERN-RND webinar “Primary progressive aphasia subtyping in clinical practice””

14-15 May 2020 | 10th European Conference on Rare Diseases & Orphan Products (ECRD2020)

Continue reading “14-15 May 2020 | 10th European Conference on Rare Diseases & Orphan Products (ECRD2020)”

12 May 2020 | ERN-RND webinar “paroxysmal dyskinesias: update on clinical and genetic aspects”

Continue reading “12 May 2020 | ERN-RND webinar “paroxysmal dyskinesias: update on clinical and genetic aspects””

27-29 April 2020 | ‘Training on strategies to foster solutions of undiagnosed rare disease cases’

Continue reading “27-29 April 2020 | ‘Training on strategies to foster solutions of undiagnosed rare disease cases’”

29 April | Share4Rare webinar: “State of the Art of Rare Disease Activities in Europe”

Continue reading “29 April | Share4Rare webinar: “State of the Art of Rare Disease Activities in Europe””

23 April 2020 | EURO-NMD webinar “exercise & NMD”

Continue reading “23 April 2020 | EURO-NMD webinar “exercise & NMD””

21 April 2020 | ERN-RND webinar “hypomyelination”

Continue reading “21 April 2020 | ERN-RND webinar “hypomyelination””

Meet us at EAN2025
June 11, 2025
Are you at this year’s EAN Congress in Helsinki? Then come and visit us at our booth (N21) in the …read more »
Review on DBS for Dystonia
June 11, 2025
Despite considerable achievements in genetics in dystonias, their response to possible treatment such as Deep Brain Stimulation (DBS) remains to …read more »
John Gerbild elected as Board Director for EURORDIS
May 19, 2025
We are happy to announce that our patient advocate John Gerbild (representative for: Ataxia/HSP) is now a newly elected Board …read more »

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ERN-RND @ern-rnd.bsky.social 14 hours

#FriedreichAtaxia (FA) is progressive, meaning what you can do keeps changing. When you think you have gotten to understand FA, something new happens - says Brona Kearney, who has been living with FA for the past 23 years.
How does this disease affect a patient's life? This is Brona's story.
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EHDN News @ehdn-news.bsky.social 16 hours

Listen to our latest podcast! www.youtube.com/watch?v=fEg4...
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EHDN News @ehdn-news.bsky.social 17 hours

Our 55th issue opens with a tribute to our much-loved and sadly missed colleague, Tim McLean. Highlights include a call to action from EHDN’s HEATED task force, clinical trial updates, and an interview with Daniel Claassen, Chief Executive Officer @ Huntington Study Group: ehdn.org/wp-content/u...
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ERN-RND @ern-rnd.bsky.social 1 day

#WorldBrainDay is coming up on July 22! We asked our network: "If you could change one thing in the health care system for Rare Neurological Diseases what would that be and why?"

This is what our patient representative Mary Kearney (Friedreich's #Ataxia) said.

#WorldBrainDay2025 #WorldBrainDay25
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ERN EuroBloodNet @erneurobloodnet.bsky.social 7 days

💻Don't miss the ERN-EuroBloodNet #ThursdayWebinar session on "Gene therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II”!

🗓️3rd July - 17:00h CEST.
👉Registrations: eurobloodnet.eu/education/th...

#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology
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ERN-RND @ern-rnd.bsky.social 1 week

Bye bye #EAN2025: meeting members and partners, introducing pur new postgraduate curriculum (hosted on eanCampus), talking about future projects, planning new cooperations - we had a great time in Helsinki and are looking forward to the #EAN2026 In Geneva! #EAN2026
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ERN-RND @ern-rnd.bsky.social 1 week

EAN2025 - #PublicBrainHealthDay #BrainHealthMission

I"f you could change ONE THING in the health care system for rare neurological diseases - what do you think is needed most and why?"

This is what our coordinator Holm Graessner would change first:

#ToBeContinued - more to come soon! #ToBeContinued