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Juergen Grunert proslijedio/la je Tweet
Great to see our
#ePAG#patientadvocates present at this event: including@vascern ePAG Chair,@jhgrunert + ePAG Co-Chair and Deputy co-chair for the#VascularAnomalies WG, Caroline van den Bosch@hevas and Maria Barea@VASCAPA!
#ERNeu#PatientInvolvement#leadershiphttps://twitter.com/eurordis/status/1199271482884538370 …
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Juergen Grunert proslijedio/la je Tweet
Thanks to
@EJPRareDiseases for being here! Looking forward to your presentation this afternoon!
https://twitter.com/EJPRareDiseases/status/1192350366567948288 …
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Juergen Grunert proslijedio/la je Tweet
#VASCERNDays2019 Starting now!! VASCERN Coordinator Guillaume Jondeau#welcoming our#HCP and#ePAG members and guests!#ERNeupic.twitter.com/uWRZ1dgtT7
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Juergen Grunert proslijedio/la je Tweet
Today EURORDIS & its members launch a new position paper on Achieving Holistic Person-Centred Care to
#LeaveNoOneBehind at#EMM2019. Our ambition is to have holistic care provided to the 30 million people living with a rare disease in Europe by 2030. http://eurordis.org/carepaper pic.twitter.com/Q3zJhR83wN
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Prof. Fransiska Malfait from Gent explaining the genetic causes and the different types of EDS on Patients Day at
#EDSMADRID2019pic.twitter.com/mEAw91n4ar
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Juergen Grunert proslijedio/la je Tweet
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.
#EDSMADRID2019pic.twitter.com/WVC6aKU4jz
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Juergen Grunert proslijedio/la je Tweet
Practicing Spanish and looking forward to talking to families about optimising physical, social & mental wellbeing in children
@EDSMadridC @TheEDSociety • Patients Day, 7 April 2019 | The Ehlers Danlos Society : The Ehlers Danlos Societyhttps://www.ehlers-danlos.com/2019-madrid/2019-madrid-patients-day/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Juergen Grunert proslijedio/la je Tweet
"We do not have a gene marker yet for
#hypermobile#EDS, but right here in#Madrid we have the first screening of the#HEDGE study currently underway, to identify the genetic cause of#hEDS." Dr. Alan Hakim#EDSMADRID2019pic.twitter.com/f9t8rv3QBj
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Juergen Grunert proslijedio/la je Tweet
"Chiari Malformation 1 appears to be more common in EDS. Dynamic imaging is essential in
#EhlersDanlos patients" ~Dr. Fraser Henderson#EDSMADRID2019#Neurology#chiari#chiarimalformationpic.twitter.com/8WbvbB2JFj
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Juergen Grunert proslijedio/la je TweetHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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Juergen Grunert proslijedio/la je Tweet
Dr. Fraser Henderson, Dr. Gilete and Dr. Bartolomé Oliver at
#EDSMADRID2019 - Dr. Henderson is now presenting on Neurology in#EDS and#HSD.#EhlersDanlos#Neurologypic.twitter.com/TTh4K6u2Fq
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#EDSMADRID2019 We are honoured with Prof. Rodney Grahame talking to us on Children and EDS/HSDpic.twitter.com/pRKqJWqA3R
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Juergen Grunert proslijedio/la je Tweet
Delighted to introduce our Platinum Sponsors
@ANSEDH, discussing the vital importance of#EDS awareness in#Spain, and the fantastic work the organisation is doing throughout Spain with medical professionals and patients.#EDSMADRID2019pic.twitter.com/6IW2xmlzWO
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#EDSMADRID2019 Lara Bloom opening the Professionals Daypic.twitter.com/Pl0tPMHjJY
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Juergen Grunert proslijedio/la je Tweet
Wir freuen uns auf den Austausch mit und die Unterstützung von
@jensspahn für Menschen mit Seltenen Erkrankungen, die er uns beim Eva Luise Köhler Forschungspreis 2019 per Videobotschaft zugesichert hat.#gemeinsamstark#ShowYourRare#ShowYouCare#ACHSEeV#VernetzteVersorgungpic.twitter.com/Lss7cib1qR
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Juergen Grunert proslijedio/la je Tweet
A warm welcome to
@sanderotter patient representative for#antiphospholipid syndrome from Nationale vereniging voor LUPUS, APS, Sclerodermie en MCTD https://nvle.org/#patientsinvolvement is our best result#ePAGs#ShowYourRare#rarediseases#ShareCareCure#ERNeu#ERNspic.twitter.com/0xTMNAKqg6
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Juergen Grunert 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...https://youtu.be/56zvsOB0BvA
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great News Gemma ! Thank you
https://twitter.com/GemmaSPearce/status/1091262483501907968 …
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Juergen Grunert proslijedio/la je Tweet
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
@ern_reconnet . PM me if you are interested to join us!pic.twitter.com/zHR5ZGZz4O
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Juergen Grunert proslijedio/la je Tweet
my part is done next month
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