Myositis UK

23/09/2026

From The University of Manchester

https://www.instagram.com/p/DdjVZ2UCruP/?utm_source=ig_web_copy_link&stkn=MzRlODBiNWFlZA==

21/09/2026

21/09/2026

The 21st of September is World Myositis Day 🌎

Those with Myositis live with a challenging condition every day, but today is to highlight a group of rare conditions known collectively as the Inflammatory Myopathies. Myositis effects children & adults, symptoms include muscle weakness, lung & heart involvement & skin rashes.

It's hearting to see the growing number of patient organisations around the world supporting those with Myositis 😊

Information about the types of Myositis https://www.myositis.org.uk/myositis-info/conditions/

09/09/2026

The Autumn edition of Myositis News (Myositis UK's newsletter) is now available to view online

See what Myositis UK publications are available to help you better understand the different types of myositis and how you can support.

09/09/2026

The Myositis UK 2026 Conference is now available to view on YouTube

Share your videos with friends, family, and the world

07/09/2026

ERN ReCONNET Webinar | Idiopathic Inflammatory Myopathies (IIMs)
We are pleased to announce the upcoming ERN ReCONNET webinar:
“Fatigue in Patients with Myositis – Beyond Muscle Weakness”
Is fatigue still the great, overlooked challenge in the management of Idiopathic Inflammatory Myopathies (IIMs)?
Join our webinar to explore the complex and multifactorial nature of this symptom, one of the most disabling yet underestimated in patients with myositis, and discover how immune-mediated inflammation, altered energy metabolism, deconditioning, sleep disturbances, and psychosocial factors all contribute to its onset, while distinguishing it from muscle weakness through multidimensional assessment tools and patient-reported outcomes.
👉 Please note that the webinar is available with subtitles in 36 different languages.
Event Details:
• Date: 16th September 2026
• Time: 16:00 CET
• Target Audience: healthcare professionals, patients, caregivers and family members
• Dedicated to: Idiopathic Inflammatory Myopathies (IIMs)
• ✍️ Registration: rb.gy/f0uqhf
🎤 Speaker: Dr. Fabricio Espinosa-Ortega
🎙 Moderator: Dr. Olga Drápalová
⚙️ ERN ReCONNET IIMs Resources: https://reconnet.ern-net.eu/disease-iims/
🗞 Newsletter subscription: bit.ly/44wk7La
💻 Webinar Archive: https://reconnet.ern-net.eu/webinar/

🎓 ERN ReCONNET Webinar | Idiopathic Inflammatory Myopathies (IIMs)

We are pleased to announce the upcoming ERN ReCONNET webinar:
“Fatigue in Patients with Myositis – Beyond Muscle Weakness”

Is fatigue still the great, overlooked challenge in the management of Idiopathic Inflammatory Myopathies (IIMs)?
Join our webinar to explore the complex and multifactorial nature of this symptom, one of the most disabling yet underestimated in patients with myositis, and discover how immune-mediated inflammation, altered energy metabolism, deconditioning, sleep disturbances, and psychosocial factors all contribute to its onset, while distinguishing it from muscle weakness through multidimensional assessment tools and patient-reported outcomes.

👉 Please note that the webinar is available with subtitles in 36 different languages.

Event Details:
• Date: 16th September 2026
• Time: 16:00 CET
• Target Audience: healthcare professionals, patients, caregivers and family members
• Dedicated to: Idiopathic Inflammatory Myopathies (IIMs)
• ✍️ Registration: rb.gy/f0uqhf

🎤 Speaker: Dr. Fabricio Espinosa-Ortega
🎙 Moderator: Dr. Olga Drápalová

⚙️ ERN ReCONNET IIMs Resources: https://reconnet.ern-net.eu/disease-iims/
🗞 Newsletter subscription: bit.ly/44wk7La
💻 Webinar Archive: https://reconnet.ern-net.eu/webinar/

05/09/2026

From: Manchester Myositis Research Group via Instagram

Last month, a study was published in Rheumatology that provided some exciting new evidence relating to diet and myositis…

In the largest study of its kind, researchers explored relationships between Med diet adherence, physical health, function and symptoms of myositis.

What does the research tell us? Could the Med diet form part of a healthy diet for someone with myositis?

https://www.instagram.com/p/DczKx8Uit68/?utm_source=ig_web_copy_link&igsi=MzRlODBiNWFlZA==

19/08/2026

Patient event in Bath 29th September 😊
Register interest via link below

Research Showcase: Royal National Hospital for Rheumatic Diseases – Bath Royal Literary and Scientific Institution, Tue 29 Sep 2026 - The RNHRD with BIRD are planning an event to showcase and inform patients (and anyone with an interest in rheumatic conditions) the current rheumatology research pr...

19/08/2026

Abcuro secure $66 million funding for IBM ulviprubart study

"Proceeds to support a potentially registrational clinical study in less severe inclusion body myositis (IBM) patients expected to begin in Q4 2026 and report top line results in 2H 2028"

"Ulviprubart showed a trend toward clinically meaningful slowing of disease progression in patients with less severe IBM in the previous Phase 2/3 MUSCLE study"

"Results from the recent Phase 2/3 MUSCLE study of ulviprubart in patients with IBM were presented at the 6th Global Conference on Myositis (GCOM) meeting in March 2026." (Myositis UK Trustee's attended).

https://abcuro.com/uncategorized/abcuro-announces-66-million-series-d-financing-to-advance-its-first-in-class-medicine-in-development-for-inclusion-body-myositis/

18/08/2026

Another study that backs the advice for a mediterranean diet

Higher mediterranean diet adherence was associated with more favourable patient-reported physical health, function, and symptom burden among individuals with idiopathic inflammatory myopathies (Myositis).

https://academic.oup.com/rheumatology/advance-article-abstract/doi/10.1093/rheumatology/keag424/8762018?

AbstractObjectives. The clinical relevance of Mediterranean diet (MedDiet) and determinants shaping adherence across disease phenotypes remain largely unex