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International Myositis Society - Newsletter 2/23
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Upcoming papers on Myositis in press at our home journal "Clinical and Experimental Rheumatology - CER"
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- Predictors of mortality for dermatomyositis patients positive with anti-melanoma differentiation-related gene 5 and stratified treatment
L. Liu, Y. Zhang, C. Wang, S. Liu, W. Guan, X. Zhang, L. Zhang, X. Liu, L. Wang, T. Li
- Differences in muscle magnetic resonance imaging findings between anti-signal recognition particle antibody-positive myopathy and anti-aminoacyl-tRNA synthetases antibody-positive dermatomyositis
M. Kimura, A. Aizawa, R. Kudou, Y. Rikitake, C. Iwao, M. Rikitake, K. Iwao, Y. Kariya, T. Kawaguchi, M. Matsuda, S. Miyauchi, I. Takajo, K. Umekita
- Efficacy and safety of abatacept for interstitial lung disease associated with antisynthetase syndrome: a case series
N. Xia, S.-M. Hong, X. Zhang, C. Shao, N. Yan, H. Ding, Q. Guo
- The diagnostic value of serum YKL-40 for myocardial involvement in immune-mediated necrotising myopathy
L. Xu, M. Yang, S. Hu, Y. Li, B.-T. Bu, S. Ji
- Elevated liver enzymes: unusual presentation of anti-MDA5 antibody associated juvenile dermatomyositis
B.Y. Yi, J. Marrs, R. Schenker, J. Suddock, J.A. Cotter, M. Cidon
These myositis-related articles will appear at CER, and can be found there in the press section.
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iMyoS - last General Assembly - report
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The last general assembly of iMyoS took place at the 14th of March 2023. After welcome by the iMyoS chairman - Jens Schmidt - the following committees reported about the current status: Nominating committee, Regional outreach committee, Committee „Outreach to professional groups“, Committee „Cooperation with professional societies“, Newsletter committee and Fundraising committee. This was followed by updates on IMACS, Euromyositis and the partnership with EEM (professional congress organizer). There was then an overview of the GCOM's 2024 (Pittsburgh) and 2026 (Lisbon). This included a discussion of past and future GCOM'S.
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(New) Patient representatives for IIM at (ERNs)
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Idiopathic inflammatory myopathies (IIM) include a large group of autoimmune diseases characterized mainly by muscle inflammation. On an international level, there are many different collaborations to study this rare disease together. One of the networks is the European Reference Network (ERN) which includes different ERN's which are dealing with various topics.
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- ERN ReCONNET is the European Reference Network on Connective Tissue and Musculoskeletal Diseases:
Recently, Olga Drápalová from the Czech Myositis Working Group (CMWG) and Silke Schlüter from the German Myositis-Group were appointed patient representatives = ePAG Advocates for IIM.
- ERN EURO-NMD is the European Reference Network for the thematic grouping of rare neuromuscular diseases.
Recently, Silke Schlüter has become a EURO-NMD patient representative, and member of the muscle diseases working group.
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ERN ReCONNET Congress 2023 - report
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The first ERN ReCONNET International Congress on rare and low-prevalence connective tissue diseases took place in Brussels, Belgium, on April 20-22, 2023.
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Knowledge, awareness, and a patient-centered approach have been the cornerstones of ERN ReCONNET's activities during its first five years of existence. The congress program created reflected ERN's mission by covering important topics in the diagnosis and treatment of rare and complex diseases, such as epidemiology, diagnosis and clinical management, biobanking and registries, and quality. The program was developed to integrate the perspectives of the various stakeholders involved in rare disease management. For this reason, the congress was not only for professionals, but also for people living with a rare disease, caregivers, clinicians, policy makers and industry.
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EULAR 2023 - report
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The EULAR congress 2023 took place from 31 May to 3 June in Milan. Ingrid Lundberg presented a great introduction to myositis on Wednesday afternoon. There were a large number of abstracts (about 50) on myositis. Ingrid De Groot (Dutch Myositis Working Group) and Manuel Lubinus (Myositis Support and Understanding Association) were on hand to describe the involvement of patient researchers and present the burden of disease on caregivers in myositis. Some interviews, parts etc. were recorded and can be viewed on YouTube.
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SAVE THE DATE - GENERAL ASSEMBLY
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The next iMyoS general assembly will be held virtually on November 16th, 2023 at 2pm CET (UTC+1). Agenda topics can be sent to info@imyos.org by the end of September.
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Please note that only iMyoS members can attend. You can sign up for membership through the website www.imyos.org
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We look forward to see you in the general assembly.
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SAVE THE DATE - GCOM 2024
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