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

3 October | World MSA Day

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Dystonia Awareness Month | September 2019

Continue reading “Dystonia Awareness Month | September 2019”

30 September | EU Health Programme High Level Conference

Continue reading “30 September | EU Health Programme High Level Conference”

Call to apply to join an ERN is open until 30 November 2019

Continue reading “Call to apply to join an ERN is open until 30 November 2019”

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”

Clinical Practice for Primary Progressive Aphasia (PPA) – Interview with Robert Rusina
May 5, 2025
It takes „about one year from the first symptoms to the first consultation of a physician, and another one year …read more »
Survey on Myoclonus Dystonia Syndrome
April 10, 2025
Myoclonus-dystonia syndrome (MDS) is a genetic movement disorder with childhood-onset, most frequently caused by SGCE defects. For this survey two …read more »
The Importance of Newborn Screening for Metachromatic Leukodystrophy (MLD)
April 7, 2025
MLD is a neurodegenerative disorder, that affects children at a very young age, leading to a premature death. In a …read more »

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Der Code des Lebens @dercodedeslebens.bsky.social 3 days

📣 Neue Folge: Von Basenpaaren und Bytes
Das menschliche Genom hat 3 Milliarden Basenpaare – eine riesige Datenflut, die nur mit Bioinformatik zu bewältigen ist. Camill Kaipf erklärt, wie man in dieses Feld kommt und warum eine sichere IT-Infrastruktur so wichtig ist.
🎧 t1p.de/xebt4
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The German Human Genome-Phenome Archive @ghga.bsky.social 1 week

🎬 In case you missed our webinar on Benchmarking and quality control for genomic variant calling with Johannes Köster., you can now watch the recordings on our Training Website: www.ghga.de/resources/tr...
The slides are also available on GHGA GitHub: github.com/GHGA-Trainin...
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ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social 2 weeks

Erksplain - Kidney Transplantation 🚨

Kidney transplants save lives — but the average wait is 6–8 years.
Deceased donors are matched by urgency and compatibility.
Most people can donate — just register or tell your family! 💡

Organ donation = a true gift of life. 🌍

#KidneyTransplant #SaveLives
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ERN-RND @ern-rnd.bsky.social 2 weeks

💻 U#webinar#webinar on “Recent Advances in Clinical Trials in Multiple System Atrophy”
📅 20th May, 3:00 CEST
🗣️ David Bendetowicz, University Hospital Bordeaux, France
Sign https://t1p.de/ri7k3de/ri7k3
Joint with the European Reference Network for Rare Neuromuscular Diseases and
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ERN-RND @ern-rnd.bsky.social 2 weeks

💻 U#webinar#webinar on “Neurogeriatric Aspects in Rare Forms of Ataxia and HSP”
📅 13th May, 3:00 CEST
🗣️ Eleni Zamba-Papanicolaou, Cyprus Institute of Neurology and Genetics
Sign https://t1p.de/v8r2hde/v8r2h
Joint with the European Reference Network for Rare Neuromuscular Diseases and