Dutch Myositis Network
@DutchMyositismyositis awareness | nation-wide collaboration in myositis care, education, and research | partner of patient organisation for myositis/neuromuscular diseases
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❗️Nieuws alert: onze website is live🎉 myositis.nl Vind hier info en nieuws over #myositis voor patiënten/hun naasten, behandelaren en studenten/onderzoekers! Met dank aan alle deelnemende expertisecentra in NL! En vergeet niet te delen! 📢 #MyositisNetwerkNederland
Onlangs nam de #myositis werkgroep @spierziekten afscheid van em. prof. dr. @MariannedeViss1 als medisch adviseur. 13 jaar stond ze hen bij met raad en daad. Dank voor alles wat je voor hen en het myositisveld hebt betekent!! 💫 #MyositisNetwerkNederland #spierziekte
Our congrats to professor Annet van Royen-Kerkhof, who has been appointed full professor in interdisciplinary education @UniUtrecht 🌞 We hope that it will strengthen her research on juvenile dermatomyositis & beyond 🚀 #DutchMyositisNetwork #MyositisNetwerkNederland #myositis
Dear Myositis Patients - please join this talk today on importance of sleep in autoimmune diseases like Myositis.
Good sleep is very important in autoimmune diseases like Myositis. Thanks to @Myositis_India for arranging this webinar on Role of sleep in restoring health.
Hear hear! Wil je samen met ons aandacht hiervoor vragen en er iets aan doen? Deel dit bericht en sluit je bij ons aan! 💪 linkedin.com/posts/ingrid-d…
Serum from patients with idiopathic inflammatory myopathy induces skeletal muscle weakness 🔎 Humanised ex vivo experimental platform 🐭 Muscles from healthy mice exposed to sera from 8 IIM pts ▶️ Force production ⬇️ across stimulation frequencies 🔗 bit.ly/3TcltY9
Interesting study @RheumJnl on the potential of DXA and hand-grip dynamometer to assess damage in persons with #myositis 💡 academic.oup.com/rheumatology/a…
The CARRA-IMACS-SHARE Group is developing #guidelines for Juvenile #Dermatomyositis management. We invite volunteers to support literature searches and data extraction. If you're interested in contributing, please fill in your details- forms.gle/Xgn1Vb3Ttv5Zjb… by 7th September.
Hot off the press 🔥📝 Social Media and Patient-Support Organizations were essential in recruiting a large nationwide online cohort of participants with myositis! 💪🏽 @MyositisSupport @TheMyositisAssc link.springer.com/article/10.100… #Myositis #MyositisResearch @docrota @shirikeret
Calling all people interested in #wellbeing to shape the future of holistic care in #autoimmune diseases #myositis #scleroderma #SLE #vasulitis #Sjogrens COVAD takes approx 15mins to complete via QR below - please share @WeAreSRUK @RAIRDA_org @UKMyositis @LUPUSUK @LatikaGupta_
Here, 16 weeks of high-intensity resistance training led to improvements in quality of life in myositis patients, that were also accompanied by improvements in functional capacity, muscle endurance and clinical measures of muscle strength.
MIHRA Membership is cost-free and strives for diverse and global inclusion. If you haven’t already registered for MIHRA membership, you are welcome to either follow the QR below or click this link for the MIHRA membership form: forms.gle/HmYbFxtPZFFu27… which takes about 5 minutes!
Our member Ingrid de Groot interviewed by @RheumatologyUK on patient involvement in rheumatology research: "consider patients as equal stakeholders, so talk to/ask us!" linkedin.com/posts/ingrid-d… #DutchMyositisNetwork #MyositisNetwerkNederlands
Classification systems used by #myositis studies 2021 to 2023. Are we doing justice to our #patients? Read the full article online @jessicaaliceday @TheMyositisAssc @MyositisSupport @MIHRAfoundation @DutchMyositis acrjournals.onlinelibrary.wiley.com/doi/epdf/10.10…
Patient experiences of muscle biopsy in idiopathic inflammatory myopathies: a cross-sectional survey @TheMyositisAssc @MyositisSupport @Myositis_India @DutchMyositis @myositisau @LatikaGupta_ @OlenaZimba link.springer.com/article/10.100…
On May 30th, we held our national #myositis research meeting in The Netherlands 🇳🇱 Programme included updates in care, highlights of (inter)national research, and casual networking! Curious for our next event? Follow us and share 🌟
De inschrijving voor het #MyositisNetwerkNederland symposium 2024 is geopend! - update diagnostiek & behandeling - nieuwe richtlijn myositis - rol verpleegkundig specialist - highlights aanstaande internationale myositiscongres - myositisonderzoek in Nederland - netwerkmoment
New! International Myositis Support Group! Connect with others from around the world, share experiences, and offer mutual support in a safe and welcoming environment. Every third Sat of the month on Zoom at 2pm ET. Register at us02web.zoom.us/meeting/regist… #GlobalCommunity #myositis
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Who to follow
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LisaChristopherStine
@DrLisaCS -
Rohit Aggarwal
@docrota -
The Myositis Association
@TheMyositisAssc -
Myma Albayda, MD, RhMSUS
@MymaAlbaydaMD -
UTSWRheum
@UTSWRheum -
Julie J. Paik
@JuliePaikMD -
EnvisionRheumat
@ERheumat -
Ashima Makol MD
@AshimaMakol -
Hector Chinoy
@drhectorchinoy -
Myositis Support and Understanding (MSU)
@MyositisSupport -
PittRheum
@PittRheum -
S. Tomaras
@SteliosTomaras -
Latika
@LatikaGupta_ -
RheumWorld 🌎
@MattersRheum -
Pedro Machado
@pedrommcmachado
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