R Polychondritis (@Polychondritis) header
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Awareness account for the rare disease Relapsing Polychondritis. RTs do not mean endorsements of info. Always consult a HCP.

London, UK
Joined May 2011
Photo by R Polychondritis (@Polychondritis)Photo by R Polychondritis (@Polychondritis)Photo by R Polychondritis (@Polychondritis)Photo by R Polychondritis (@Polychondritis)Photo by R Polychondritis (@Polychondritis)Photo by R Polychondritis (@Polychondritis)Photo by R Polychondritis (@Polychondritis)Photo by R Polychondritis (@Polychondritis)Photo by R Polychondritis (@Polychondritis)Photo by R Polychondritis (@Polychondritis)
R Polychondritis retweeted
Clinical characteristics and associated factors of cardiovascular involvement in patients with relapsing polychondritis pubmed.ncbi.nlm.nih.gov/4260…
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R Polychondritis retweeted
What actually breaks in relapsing polychondritis? A scRNA-seq study mapped the peripheral immune system cell-by-cell to find out, uncovering coordinated alterations in T cell activation and redistribution, B cell differentiation, myeloid-driven inflammation, and prominent alarmin-related signatures A&R doi.org/10.1002/art.70294
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R Polychondritis retweeted
Unveiling the clinical and proteomic spectrum of relapsing polychondritis with respiratory involvement pubmed.ncbi.nlm.nih.gov/4259…
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R Polychondritis retweeted
✅ WE NEED TO REBOOT THE GUIDELINES SYSTEM check our comment for @NatRevRheumatol with @gponsestel about a global collaborative approach to living guideline development in #rheumatology 👍 📥 CHECK IT at: rdcu.be/fBJSQ
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R Polychondritis retweeted
Manifestations and Treatment in Relapsing Polychondritis A large multicenter cohort study of Relapsing Polychondritis (RP) describes the clinical manifestations and treatment approaches to this rare, heterogeneous, multisystem disease. buff.ly/6rLa0nv
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R Polychondritis retweeted
Kyoto U. cohort study of 55 relapsing polychondritis pts (503 Pt-yrs) Rx w/ TNFi, IL-6i or none -- Crude relapse rates were 46.9/100PYs NoBio, 22.4 TNFi, & 12.5 IL-6Ri. Adjusted relapses signif lower w/ TNFi (IRR 0.4) & IL-6Ri (IRR 0.2) vs no biologic. Estimates for hospitalised Infx were imprecise. buff.ly/Y8awHpH
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R Polychondritis retweeted
Biologic exposure (TNF-α inhibitors [TNFi] or IL-6 receptor inhibitors [IL-6Ri]) is associated with substantially lower relapse rates in relapsing #polychondritis (RP) compared with periods without biologics, as demonstrated by a recent retrospective cohort study (Kyoto University Hospital, 2000–2023). 𝗦𝘁𝘂𝗱𝘆 𝗽𝗼𝗽𝘂𝗹𝗮𝘁𝗶𝗼𝗻 ◦ 55 adults with RP followed for 503.5 person-years (28 never exposed to biologics; 27 ever exposed). ◦ Follow-up time was divided into No-Bio, TNFi, and IL-6Ri periods. ◦ Primary outcomes were relapse and hospitalized infection. ◦ Analyses used negative binomial regression with person-time offset, adjustment for prespecified covariates, and regression standardization for absolute rates/differences. 𝗠𝗮𝗶𝗻 𝗿𝗲𝘀𝘂𝗹𝘁𝘀 ◦ Within the ever-Bio group, crude relapse rates were 46.9 (No-Bio), 22.4 (TNFi), and 12.5 (IL-6Ri) per 100 person-years. In adjusted models: • TNFi vs No-Bio: IRR 0.4 (95% CI 0.2–0.8); adjusted rate difference −54.0 events per 100 person-years (95% CI −141.5 to −5.5). • IL-6Ri vs No-Bio: IRR 0.2 (95% CI 0.1–0.4); adjusted rate difference −68.3 events per 100 person-years (95% CI −149.8 to −21.4). ◦ Hospitalized infection IRRs were imprecise (TNFi 0.3 [0.1–1.4]; IL-6Ri 0.7 [0.2–2.6]). Overall, biologic periods showed lower relapse incidence than non-biologic periods, while data on serious infections remained inconclusive due to limited precision. *Nakayama Y, Aitani Y, Shirakashi M, et al. Association between biologic exposure and relapse incidence in relapsing polychondritis: a retrospective cohort study. Rheumatology (Oxford). 2026;65(6):keag305. 🔗doi.org/10.1093/rheumatology…
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R Polychondritis retweeted
💊 Adherence works best when patients & healthcare professionals work as a team. Patients need a safe space to explain what makes it difficult. HCP need to ask the right questions. Prof Nathalie Costedoat-Chalumeau explains why this conversation matters youtu.be/hNlDFIGck7E
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R Polychondritis retweeted
✅ What is the relationship between #SLE #brainfog, and pain, stress, anxiety, etc... If you have #LUPUS PLEASE HELP US with the #CORRELATE study. By participating you will get your online brainfog #LBFSS score and help this research 🙏🔁 ️ 🦋LINK: lupusresearch.limequery.org/…
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R Polychondritis retweeted
✅ Our novel @ERN_ReCONNET #ELICIT methodology is published!!!! 👍 #ELICIT is an innovative approach to gather #CONSENSUS 🤝 on complex, 'high-level' concepts related to rare connective tissue and musculoskeletal diseases 🔥 Openaccess 🔓 DOWNLOAD at: doi.org/10.1186/s13023-026-0…
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R Polychondritis retweeted
- Do you have #LUPUS? 🦋 - Do you have #BRAINFOG? ⛈ - If so, check the Lupus Brainfog Severity Scale (#LBFSS) - Using table 3 you can assess the SEVERITY of your brainfog and compare with others 🔓 OPENACCESS FREE LINK: doi.org/10.1136/lupus-2026-0…
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R Polychondritis retweeted
Relapsing polychondritis is rare, but that's exactly why it's so easy to overlook. Watch the full discussion and strengthen your approach to this uncommon but important autoimmune condition on Scholars in Medicine scholarsinmedicine.com/speci…
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🌟 Who will be the next EURORDIS #BlackPearlAwards Young Advocate? We're looking for outstanding advocates aged 30 or under who are raising awareness and creating lasting change for people living with a rare disease. Nominate them today! 👉 go.eurordis.org/BPA2027
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R Polychondritis retweeted
✅ Development and validation of the Relapsing #Polychondritis disease-specific Quality of Life instrument (ERN ReCONNET RP-QoL) is now PUBLISHED 👍 May this help patients with RP around the world 🌍🌎🌏 📥LINK:doi.org/10.1093/rheumatology…
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R Polychondritis retweeted
✅ Happy to report that our new @ERN_ReCONNET disease-specific Quality of life (#QoL) outcome mesure for relapsing #polychondritis has been accepted for publication in @RheumJnl 👍 This is a 2y-long highly complex multistep study involving both RP experts and patients 🤝
✅ Have you participated to the @ERN_ReCONNET #RPQoL survey about Quality of Life domains impaired in relapsing #polychondritis? If so we you like to thank YOU 🙏 We gathered amazing feedback from 275+ participants. We will soon organize a debrief webinar to share the results 👍
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⏰ Only 8 days left! What do 10,700+ people living with rare and undiagnosed conditions tell us about mental health and wellbeing? Join us on 18 June as we unveil the latest #RareBarometer findings and discuss what must change. 👉 go.eurordis.org/RBresults
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