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@ERN_RND proslijedio/la je Tweet
#ejprd#RDR#challenges#call:#registration to the#networking#event has been extended to 6 Feb,#SignUp
https://www.ejprarediseases.org/index.php/funding-schemes/rare-diseases-challenges/ …
@vascern@ERNIthaca@eurefnetwork@ErnLung@ern_bond@ERN_eUROGEN@ernica_ern@_ernrita@ern_rare_liver@ELIXIREurope@BBMRIERIC@EatrisEricpic.twitter.com/1udTnYnYTx
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And a summary to finish off the webinar before addressing questions asked by attendees to Kailash Bhatia, today’s speaker!pic.twitter.com/R8HftaNh04
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#ernRND#webinar on the clinical evaluation of#dystonia by Kailash Bhatia@UCLIoN in progress. Great attendance from all over the world! Time to learn
@dystoniaeuropepic.twitter.com/s6MmuE1z76
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Don't forget to attend this afternoon 's #ernRND webinar in collaboration with@euro_nmd@EANeurology Topic: Clinical Evaluation of Dystonia Speaker: Kailash Bhatia,@MDC_IoN_UCL@UCLIoN
15-16h CET
Sign up
http://bit.ly/2NLkAUE pic.twitter.com/VcR9Qvx9BW
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@ERN_RND proslijedio/la je Tweet
SCA Global 2020, global spinocerebellar
#ataxias conference: 6-7 April 2020 in Bonn@DZNE_de, Germany! Poster abstract submission deadline: 16 Feb Register now & discover the latest in SCA clinical research
http://bit.ly/2rgqgO8
@NAF_Ataxia@Euroataxia@AtaxiaUK@ERN_RNDHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
@ERN_RND proslijedio/la je Tweet
EHDN/MDS Call open for short clinical fellowship in
#Huntingtonsdisease http://www.ehdn.org/hd-clinicians-researchers/fellowship-programme/ … Apply now@movanfleni@movedisorder@EANeurology#neurology#FellowshipHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
@ERN_RND proslijedio/la je Tweet
Dans le cadre de leur programme éducatif sur les maladies neurologiques, l'ERN-RND vous propose demain, de 15h à 16h, le webinaire "Clinical Evaluation of Dystonia" présenté par Kailash Bhatia.
Pour en savoir plus et vous inscrire, c'est par ici
[ http://brain-team.fr/ern-programme-educatif-sur-les-maladies-neurologiques/ … ]pic.twitter.com/YaK42iEIi0
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#ernRND February#Newsletter is out! What's new
ERN-RND Annual meeting, upcoming webinars in collaboration w/ @euro_nmd &@EANeurology , successful registry application, new affiliated partner Mater Dei Hospital in Malta, SCA Global Conference & more
http://bit.ly/2UkeHBL pic.twitter.com/PizupDsEmC
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Submit your poster abstract for
#ECRD2020 before 10 February
https://www.rare-diseases.eu/posters/ https://twitter.com/eurordis/status/1224247430545317888 …
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@ERN_RND proslijedio/la je Tweet
Join the webinar with Professor Kailash Bhatia on February 4 2020, 3-4pm CET. The talk "Clinical evaluation of dystonia" will be presented by Kailash Bhatia, UCL Queen Square Institute of Neurology. Here is the link to sign up to the webinar: https://buff.ly/2uNMmJB pic.twitter.com/aoUNQ2rNDz
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#DYK Ataxia Global Initiatives is a worldwide platform for clinical research in ataxias? SCA Global focuses on Spinocerebellar Ataxias & ARCA Global on Autosomal-recessive Cerebellar Ataxias. Researchers can express interest in participating
http://bit.ly/2R8WCmY @NAF_Ataxiapic.twitter.com/km9oakHZGG
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Very important insight from today’s talk on genetic testing by Tobias Haack
@uktuebingen : 50% of rare disease patients remain without a diagnosis even after WES analysis! That’s why@Solve_RD has an essential role to play
pic.twitter.com/1Gyzct1RT7
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Thank you very much to our patient advocates for their visit to Tübingen! Astri Arnesen
@EuroHuntington Lori Renna Linton, Euro-HSP Mary Kearney, FARA Ireland Monika Benson@dystoniaeurope Marek Parowicz@ahc18plus Lubomír Mazouch, Spolek pro Atypické Parkinsonské syndromyPrikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
@ERN_RND proslijedio/la je Tweet
Meeting of
@ERN_RND European Reference Network - Rare Neurological Diseases in Tuebingen together with head of the initiative Prof Holmes and the other patient advocates in the group!#dystonia#dystoniaawareness#dystoniaeurope#rareneuroligicaldiseases
pic.twitter.com/x8CGq85rub
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Work in progress: we are filming an interview with #ernRND coordinator@Holmson69 explaining what are#ERNs and what#ernRND is! Excited to share it with you soon
pic.twitter.com/RRqzOhqTmt
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CPMS intro by
#ernRND Helpdesk Manager Sanja: “3 main parts of an online consultation”pic.twitter.com/WakAPF0r5Z
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CPMS intro by Helpdesk Manager Sanja!
#CPMS is an online secure platform clinicians around#Europe use to discuss complex & rare patient cases where knowledge is scarce & collaboration is essential to find right diagnostic & treatment@EuroHuntington@dystoniaeurope@ahc18pluspic.twitter.com/sZDO7jj1SK
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Very interesting presentation on genetic testing in RNDs by Tobias Haack, Institute of medical genetics & applied genomics
@uktuebingen and how it works in our on site labpic.twitter.com/Z8cJUB1uHI
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Presentation by
#ernRND coordinator@Holmson69 on care need survey designed by ERN-RND working group about the management of different rare movement disorders in individual countries in Europe. Main question: what can be implemented to improve management of particular MD?pic.twitter.com/8LfxUqE5IN
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Today
#ernRNDcoordination office is meeting w/ ePAGs@uktuebingen Programme AM: framework for ePAG involvement, comms strategy, CPMS ppt & genetic testing in RNDs by Tobias Haack, molecular genetics lab supervisor in Tübingen@Holmson69@EuroHuntington@dystoniaeurope@ahc18pluspic.twitter.com/AkaCkOt1Zn
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