Communicating and counselling patients – ERN-RND | European Reference Network on Rare Neurological Diseases

Insights into growing up in families affected by Huntington’s disease

28 Nov. 2023

Speaker: Siri Kjølaas
Oslo University Hospital, Centre for rare disorders, Oslo, Norway

Recording

Slides

Diagnostic workup and prognostic implication for sleep disorders in atypical parkinsonisms

14 Nov. 2023

Speaker: Giovanna Calandra Buonaura
University of Bologna, IRCCS Institute of Neurological Sciences, Bologna, Italy

Recording

Slides

X-Linked leukodystrophies – Update

7 Oct. 2021

Speaker: Caroline Sevin
Reference Center for Leukodystrophies, Hôpital de Bicêtre and ICM (institute of Brain and Spine), Paris, France

Recording

Slides

Better Conversations – Communication Partner Training for language led dementias

4 May 2021

Speaker: Anna Volkmer
University College London, United Kingdom

Recording

Slides

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 »
Conference: Towards an EU Action Plan on Rare Diseases
March 27, 2025
What is the use of Patient Registries? And how does data sharing in the ERNs work? Our coordinator Holm Graessner …read more »

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JARDIN Joint Action @jardinjointaction.bsky.social 4 days

📧✨️ The 2nd edition of the JARDIN newsletter is coming soon!

Read about:
🌍 News from JARDIN’s work packages
💼️ Highlights from participating Member States
📅 Events, resources and ERN-related news
👥 Stories from people living with #RareDiseases & complex conditions

✍️ jardin-ern.eu/newsletter
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ERDERA @erdera.bsky.social 4 days

🔍 Have your say in shaping the future of rare disease research in Europe! ERDERA's survey targets funding, training & policy gaps in under-represented countries. It takes 10 mins, open till mid-May 👉 loom.ly/XLDSDeE #RareDiseases #ERDERA #PublicHealth
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ERN-RND @ern-rnd.bsky.social 5 days

💻 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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ERDERA @erdera.bsky.social 5 days

📣 In 2 weeks, Daria Julkowska will speak at #iDR25 in Amsterdam, hosted by #iDR25 💊🔬 Joined by a panel of experts, the session "Repurposing for the under-served", will explore vital questions on repurposing for under-served populations. #drugrepurposing #RareDiseases #ERDERA
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ERN-RND @ern-rnd.bsky.social 2 weeks

"The Patient Journey would have told the nurse on duty that the sweatpants I was wearing [...] meant that I was not a kickboxer. He legit thought I was a kickboxer,” remembers Lori Renna Linton, who has been having HSP (Hereditary Spstic Paraplegia) for 16 years.
www.youtube.com/watch?v=NHpG...