Juergen Grunert

@jhgrunert

Patientenvertreter für das Ehlers-Danlos Syndrom auf nationaler und internationaler Ebene // Patient Advocat for EDS on a national and international level

Fürth, Bayern, Germany
Vrijeme pridruživanja: travanj 2018.

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  1. proslijedio/la je Tweet
    26. stu 2019.

    Great to see our present at this event: including ePAG Chair, + ePAG Co-Chair and Deputy co-chair for the WG, Caroline van den Bosch and Maria Barea !👏😊

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  2. proslijedio/la je Tweet
    7. stu 2019.

    Thanks to for being here! Looking forward to your presentation this afternoon! 😊

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  3. proslijedio/la je Tweet
    6. stu 2019.

    Starting now!! VASCERN Coordinator Guillaume Jondeau our and members and guests!

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  4. proslijedio/la je Tweet
    17. svi 2019.

    Today EURORDIS & its members launch a new position paper on Achieving Holistic Person-Centred Care to at . Our ambition is to have holistic care provided to the 30 million people living with a rare disease in Europe by 2030.

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  5. 7. tra 2019.

    Prof. Fransiska Malfait from Gent explaining the genetic causes and the different types of EDS on Patients Day at

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  6. proslijedio/la je Tweet
    6. tra 2019.

    Exercise therapy - what is not appropriate. 1. Open Chain exercises 2. End range with external load 3. Too large range of motion 4. High impact exercises such as jumping putting high loads on joints.

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  7. proslijedio/la je Tweet
    5. tra 2019.

    Practicing Spanish and looking forward to talking to families about optimising physical, social & mental wellbeing in children ⁦⁩ ⁦⁩ • Patients Day, 7 April 2019 | The Ehlers Danlos Society : The Ehlers Danlos Society

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  8. proslijedio/la je Tweet
    6. tra 2019.

    "We do not have a gene marker yet for , but right here in we have the first screening of the study currently underway, to identify the genetic cause of ." Dr. Alan Hakim

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  9. proslijedio/la je Tweet
    6. tra 2019.

    "Chiari Malformation 1 appears to be more common in EDS. Dynamic imaging is essential in patients" ~Dr. Fraser Henderson

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  10. proslijedio/la je Tweet
    6. tra 2019.
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  11. proslijedio/la je Tweet
    6. tra 2019.

    Dr. Fraser Henderson, Dr. Gilete and Dr. Bartolomé Oliver at - Dr. Henderson is now presenting on Neurology in and .

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  12. 6. tra 2019.

    We are honoured with Prof. Rodney Grahame talking to us on Children and EDS/HSD

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  13. proslijedio/la je Tweet
    5. tra 2019.

    Delighted to introduce our Platinum Sponsors , discussing the vital importance of awareness in , and the fantastic work the organisation is doing throughout Spain with medical professionals and patients.

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  14. 5. tra 2019.

    Lara Bloom opening the Professionals Day

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  15. proslijedio/la je Tweet

    Wir freuen uns auf den Austausch mit und die Unterstützung von für Menschen mit Seltenen Erkrankungen, die er uns beim Eva Luise Köhler Forschungspreis 2019 per Videobotschaft zugesichert hat.

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  16. proslijedio/la je Tweet
    15. velj 2019.

    A warm welcome to patient representative for syndrome from Nationale vereniging voor LUPUS, APS, Sclerodermie en MCTD is our best result

    , , i još njih 6
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  17. proslijedio/la je Tweet

    If it is suspected that you or someone you love may have Loeys-Dietz Syndrome, it’s important to see a geneticist who is familiar with connective tissue disorders! Because LDS is such a newly discovered disorder, new strides in diagnosis and...

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  18. 1. velj 2019.
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  19. proslijedio/la je Tweet
    17. sij 2019.

    Idiopathic Inflammatory Myopathies, Antiphospholipid Syndrome, IgG4-related diseases and Undifferentiated Connective Tissue Disease patients needed!! Fluent in English and willing to represent the wider patient community at . PM me if you are interested to join us!

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  20. proslijedio/la je Tweet
    15. sij 2019.
    Odgovor korisniku/ci

    my part is done next month

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