News – Page 8 – ERN-RND | European Reference Network on Rare Neurological Diseases

Successful ERN-RND Registry Application!

Continue reading “Successful ERN-RND Registry Application!”

New #RareDiseaseDay 2020 poster available!

Continue reading “New #RareDiseaseDay 2020 poster available!”

ERN-RND welcomes new affiliated partners

Continue reading “ERN-RND welcomes new affiliated partners”

New EJP RD call: Networking Support Scheme is open!

Continue reading “New EJP RD call: Networking Support Scheme is open!”

“ERNs in a crucial phase of enlargement”

Continue reading ““ERNs in a crucial phase of enlargement””

ERN Newsletter is out!

Continue reading “ERN Newsletter is out!”

Euro-ataxia publishes patient charter

Continue reading “Euro-ataxia publishes patient charter”

EAN 2020 abstract submission is open!

Continue reading “EAN 2020 abstract submission is open!”

#BrainLifeGoals photo competition, submit a photograph!

Continue reading “#BrainLifeGoals photo competition, submit a photograph!”

European Conference on Rare Diseases & Orphan Products 2020, submit your poster abstract!

Continue reading “European Conference on Rare Diseases & Orphan Products 2020, submit your poster abstract!”

100 days to go until Rare Disease Day 2020!

Continue reading “100 days to go until Rare Disease Day 2020!”

SCA Global Conference registration + poster abstract submissions open!

Continue reading “SCA Global Conference registration + poster abstract submissions open!”

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”

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”

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

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

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”

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”

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”

Find us on Bluesky

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ERN-RND @ern-rnd.bsky.social 2 days

"Look, this is what my rare disease is about" - use our #PatientJourney document on #CervicalDystonia to quickly and easily explain to others your rare condition. Be it your employer, your doctor, your friends or the health insurance. Hear about Monika Benson's story: www.youtube.com/watch?v=1A2W...
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ERN-RND @ern-rnd.bsky.social 3 days

"National Reference Networks" - Holm Graessner shares insights at our Scientific Symposium "European Healthcare for RND Patients", Oct 28, 12:20 CET.

Registration (free of charge): https://f.mtr.cool/mpyqdaaqli
Program: https://f.mtr.cool/qxrjzcwauh
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ERN-RND @ern-rnd.bsky.social 3 days

Free #Webinar on #FrontotemporalDementia and #PPA - which stands for Primary Progressive Aphasia- today at 3 CEST with Alexa Häger on:
"Social and Lifestyle Issues Related to FTD and PPA" - to register, please click here: t1p.de/z2aca

Learn more on PPA with our short interview: tinyurl.com/3nrhcuh3
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ERN-RND @ern-rnd.bsky.social 4 days

💻 U#webinar#webinar on “Social and Lifestyle Issues Related to FTD and PPA”
📅 30th September, 3:00 CEST
🗣️ Alexa Häger, University Hospital Aachen, Germany
Sign https://t1p.de/z2acade/z2aca

Joint with the European Reference Network for Rare Neuromuscular Diseases and
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ERN-RND @ern-rnd.bsky.social 1 week

#NewbornScreeningAwarenessMonth

Learn more about newborn screening with #NewbornScreeningAwarenessMonth #ScientificPill here: erdera.org/article/harm...

...and about newborn screening for #MetachromaticLeukodystrophy in our video interview here: www.youtube.com/watch?v=pd7m...

#MLD #Leukodystrophy
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ERN-RND @ern-rnd.bsky.social 1 week

💻 U#webinar#webinar on “Social and Lifestyle Issues Related to FTD and PPA”
📅 30th September, 3:00 CEST
🗣️ Alexa Häger, University Hospital Aachen, Germany
Sign https://t1p.de/z2acade/z2aca

Joint with the European Reference Network for Rare Neuromuscular Diseases and
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ERN-RND @ern-rnd.bsky.social 1 week

Have you already heard of Lighthouse Concept? Curious to know what it is about? Then join our Symposium on October 28 at 9 CET and listen to Ines Hernando's talk to learn more about it.
Registration (free of charge) and programme:
www.ern-rnd.eu/annual-meeti...