info button

info button

You must be logged in to post a comment.

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 »

Find us on Bluesky

Get to this post

JARDIN Joint Action @jardinjointaction.bsky.social 1 day

📧✨️ 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
Get to this post

ERDERA @erdera.bsky.social 2 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
Get to this post

ERN-RND @ern-rnd.bsky.social 3 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
Get to this post

ERDERA @erdera.bsky.social 3 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
Get to this post

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...

Leave a Reply