@ERN_RND

@ERN_RND

European Reference Network for Rare Neurological Diseases. Sign up to the newsletter here:

Vrijeme pridruživanja: svibanj 2018.

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  1. proslijedio/la je Tweet
    prije 11 sati
    , , i još njih 7
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  2. prije 13 sati

    And a summary to finish off the webinar before addressing questions asked by attendees to Kailash Bhatia, today’s speaker!

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  3. prije 14 sati

    💻 on the clinical evaluation of by Kailash Bhatia in progress. Great attendance from all over the world! Time to learn 📚

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  4. prije 16 sati

    🔜 Don't forget to attend this afternoon 's webinar in collaboration with Topic: Clinical Evaluation of Dystonia Speaker: Kailash Bhatia, ⏰ 15-16h CET Sign up 👉

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  5. proslijedio/la je Tweet
    prije 19 sati

    SCA Global 2020, global spinocerebellar conference: 6-7 April 2020 in Bonn , Germany! Poster abstract submission deadline: 16 Feb Register now & discover the latest in SCA clinical research ➡️

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  6. proslijedio/la je Tweet
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  7. proslijedio/la je Tweet
    3. velj

    📚 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 ⤵️ [ ]

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  8. 3. velj

    ✉️ February is out! What's new❔ ERN-RND Annual meeting, upcoming webinars in collaboration w/ & , successful registry application, new affiliated partner Mater Dei Hospital in Malta, SCA Global Conference & more 👉

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  9. 3. velj
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  10. proslijedio/la je Tweet
    1. velj

    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:

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  11. 31. sij

    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 👉

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  12. 30. sij

    Very important insight from today’s talk on genetic testing by Tobias Haack : 50% of rare disease patients remain without a diagnosis even after WES analysis! That’s why has an essential role to play 💡

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  13. 30. sij

    Thank you very much to our patient advocates for their visit to Tübingen! Astri Arnesen Lori Renna Linton, Euro-HSP Mary Kearney, FARA Ireland Monika Benson Marek Parowicz Lubomír Mazouch, Spolek pro Atypické Parkinsonské syndromy

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  14. proslijedio/la je Tweet
    30. sij

    Meeting of European Reference Network - Rare Neurological Diseases in Tuebingen together with head of the initiative Prof Holmes and the other patient advocates in the group! 🧡💙

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  15. 30. sij

    🎬 Work in progress: we are filming an interview with coordinator explaining what are and what is! Excited to share it with you soon 😃

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  16. 30. sij

    CPMS intro by Helpdesk Manager Sanja: “3 main parts of an online consultation”

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  17. 30. sij

    CPMS intro by Helpdesk Manager Sanja! is an online secure platform clinicians around use to discuss complex & rare patient cases where knowledge is scarce & collaboration is essential to find right diagnostic & treatment

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  18. 30. sij

    Very interesting presentation on genetic testing in RNDs by Tobias Haack, Institute of medical genetics & applied genomics and how it works in our on site lab

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  19. 30. sij

    Presentation by coordinator 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?

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  20. 30. sij

    Today office is meeting w/ ePAGs Programme AM: framework for ePAG involvement, comms strategy, CPMS ppt & genetic testing in RNDs by Tobias Haack, molecular genetics lab supervisor in Tübingen

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