MIHRA is a non-profit science, education & advocacy organization focused on better living & research across myositis-related disorders
Global organization
Joined March 2024
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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/HmYbFxtPZFFu27yL6
which takes about 5 minutes!
MIHRA retweeted
This w'end #MIHRA leadership in Dallas #MyoCon. @werthlab rec'd Science Award‼️ Intro'd by past recipient& MIHRA board member @HeleneAlex1969 MIHRA Mayo board members FloranneErnste & @ElieNaddaf3 rec'd Care Award‼️ Creating a World Where We Cure Myositis Together ✨️❤️ 🧡💛✨️
💪🌟🌈🙏🏻Another gift from @ElieNaddaf3
Thanks Lyell and @ContinuumAAN for giving me the opportunity to write the chapter on IBM!
This w'end #MIHRA leadership in Dallas #MyoCon. @werthlab rec'd Science Award‼️ Intro'd by past recipient& MIHRA board member @HeleneAlex1969 MIHRA Mayo board members FloranneErnste & @ElieNaddaf3 rec'd Care Award‼️ Creating a World Where We Cure Myositis Together ✨️❤️ 🧡💛✨️
On #WorldMyositisDay we honor the remarkable journey of the #myositis global community of patients, clinicians, researchers and industry partners to cultivate AWARENESS and ACTION worldwide! Creating a world where we can cure myositis together! #MIHRA
Congratulations to our partners in science at @priovanttx and to our investigators & patients who made this achievement a reality!
💜✨️Better together in Rare Disease Science!
Myositis Immersion! #GCOM2026 🇵🇹 Lisbon Portugal 🇵🇹
In 2024 #MIHRA , the singular nonprofit research & clinical trial readiness engine in IIMs, awarded 9 GCOM early&mid-career fellowships
True to MIHRA's mission
they're back‼️
PTs OTs MDs PhDs RNs
👇🏾‼️
preview.mailerlite.io/previe…
MIHRA retweeted
Our recent study @seminarthrheum demonstrated good measurement properties for sit to stand and timed up and go tests when self-performed by patients with #myositis at home, while six min walk distance was significantly lower at home compared to office
sciencedirect.com/science/ar…
MIHRA retweeted
In this cohort of patients who underwent >1 muscle biopsy, repeat biopsy achieved a specific diagnosis in 43% of cases and impacted clinical decision-making.
The highest yield was when IBM was suspected, or when B1 showed non-specific myopathy. onlinelibrary.wiley.com/doi/…
MIHRA retweeted
This study evaluated several algorithms for identifying dermatomyositis cases across a range of different databases. Performance varied widely. Selected good performers for incidence & prevalence had sensitivity of 42% & 49%, and PPV 83% & 84%, resp.
AC&R
doi.org/10.1002/acr.25625
Thank you @UKMyositis for being a gamechanger in the UK & the world stage in #myositis congrats @nathanroutledge for communicating an important topic‼️
Great talk by @nathanroutledge from @UCLIoN @UCL_QS_CNMD on his Myositis UK-funded PhD: exploring disease pathways for IBM stratification and therapy. Delighted to be at the @UKMyositis annual meeting - an event I’ve proudly contributed to for over a decade! #Myositis #IBM
Discussing tough issues with peers can increase quality of life. Thank you @MyositisSupport ✨️
MSU is dedicated to giving the Myositis community a platform to share and discuss the tough issues we face. We created To Be Honest Tuesday to address those hard and uncomfortable truths. Ready to share? Click here video.videorequest.io/reques… #ToBeHonestTuesday #YourStoryMatters #MSU
Don't miss #MIHRA ⭐️'s @ElieNaddaf3
@DrLisaCS 💥fast high yield learning - making the correct diagnosis is crucial - but not common 😵😮💨.. these rapid fire case studies are needed! 💥
𝐓𝐎𝐌𝐎𝐑𝐑𝐎𝐖! Don't miss this fast-paced but deep dive into real-life inclusion body myositis cases, led by @drlisacs + @ElieNaddaf3.
IBM is rare, but the misdiagnoses are common. Get up to speed on what every clinician needs to know! ➡️ ms.spr.ly/6018SdFwQ
#AAN ❗️ join #MIHRA leads ✨️ @ElieNaddaf3 ✨️
✨️ @MymaAlbaydaMD ✨️and other tremendous contributors to the #myositis field at the course on approach and interpretation of diagnostics
👇🏽👇🏿👇🏼❗️❗️❗️
Come join us tomorrow Monday 7 am for the #myositis course to learn how to approach patients and interpret testing with an overview of muscle pathology, followed by case-based discussions with experts in the field:
@MymaAlbaydaMD @christiaab
#AANAM2025 #Myotwitter #Neurotwitter
🧡💛❤️🏋🏽♀️🏋🏽♀️🏋🏽♀️
Link to register mihrafoundation.org/registra…? 26 March at 9am EST
#MIHRA Seminars in Myositis >> Research Care & Living with IBM
An incredible program, pioneer scientific & patient faculty in IBM. ⭐️🏋🏽♀️⭐️
🎊✨️⭐️🏋🏽♀️🏋🏽♀️⭐️✨️🎊
Register, Register, Register 🤸🏾♀️🎶✨️
✨️👇🏾👇🏽👇🏿✨️
We have a great program lined up for this upcoming 2-hr webinar on #IBM dedicated to patients and providers, and it is cost free. Hope to see you all !
@MyositisSupport @CureIBM @TheMyositisAssc @aanem @aan
Wonderful opportunity❗️
✨️🎊 👇🏽 👇🏾 👇🏼🎊✨️
📢 Time is Running Out – Register for ArLAR25 Now! ⏳
📍 Venue: Hôtel El Aurassi, Alger
📅 Dates: April 23-26, 2025
🔗 International Registration: conference.infomedweb.com/ar…
🔗 Local Registration (For Algerian Rheumatologists): conference.infomedweb.com/ar…
#ArLAR25 #Rheumatology
MIHRA retweeted
📢 Time is Running Out – Register for ArLAR25 Now! ⏳
📍 Venue: Hôtel El Aurassi, Alger
📅 Dates: April 23-26, 2025
🔗 International Registration: conference.infomedweb.com/ar…
🔗 Local Registration (For Algerian Rheumatologists): conference.infomedweb.com/ar…
#ArLAR25 #Rheumatology
What a GREAT day! Thank you for AMAZING contributions! Rare Disease Day Conference rescue #TOGETHERNESS #MIHRA partners @TheMyositisAssc @DutchMyositis 💜✨️ heart, muscle &mind!
@ElieNaddaf3 @werthlab @HeleneAlex1969
@JuliePaikMD @pedrommcmachado @SaketkooMD & many more💜✨️
NIH Rare Disease Day cancelled….
No problem
@TheMyositisAssc and @MIHRAfoundation stepped in and organized a last-minute outstanding #RareDiseaseDay2025 with more than 250 participants from all across the world ❤️
Join #MIHRA Scientific Seminar on IBM❗️
26Mar 9amEST
@ElieNaddaf3
@MymaAlbaydaMD
@pedrommcmachado
@DutchMyositis
@MariannedeViss1
@MerrileeNeedham
@HeleneAlex1969
@AANEMorg
@TheMyositisAssc
@MyositisAust
@MyositisSupport
@CureIBM
@SaketkooMD
@mzdimachkie
mihrafoundation.org/registra…
Please see this dynamic opportunity from AAN NET!
Pls join our wonderful AAN NET Level 1 team, who will help us enhance our teaching skills.🧠🎉@Mariecarleugene Mona Soni, MD @SSNeuroMD @zach_london @IRybinnik @jepatinom @NeuroLinaO Adam Quick, MD
@ranivasireddy22