The Myositis Association

The Myositis Association The Myositis Association is the leading international organization serving the myositis community.
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Exciting news! Meghan O'Rourke MyoCon 2026 Opening Keynote Speaker and New York Times best-selling author of The Invisib...
09/03/2026

Exciting news! Meghan O'Rourke MyoCon 2026 Opening Keynote Speaker and New York Times best-selling author of The Invisible Kingdom: Reimagining Chronic Illness, was recently featured in Publishers Weekly for her upcoming anthology, The Story of the Body: Poems of Illness & Recovery.

The anthology brings together poems about illness, resilience, recovery, and the moments when words can help us say what feels impossible to express.

We are honored to welcome Meghan to MyoCon 2026, where she will share a powerful keynote about chronic illness, being seen, and finding language for experiences that are often misunderstood.

Read now: https://www.publishersweekly.com/9781594633799

The 2026 MyoCon Recordings package is available for purchase and includes recordings from most sessions on the conferenc...
09/03/2026

The 2026 MyoCon Recordings package is available for purchase and includes recordings from most sessions on the conference agenda, including the opening and closing keynote addresses, the Heroes in the Fight Awards Ceremony, virtual sessions, and audio-recorded breakout sessions synced with presentation slides.

Those who purchase the recordings will also receive access to the live virtual MyoCon sessions, making it a great way to learn, connect, and stay engaged from wherever you are.

Registered MyoCon attendees receive the recordings automatically. Virtual-only purchasers can order the full package for $149.

Order your MyoCon Recordings package today. https://www.myositis.org/myositis-conference/virtual-sessions-and-recordings/

If you’ve been hearing cheers from TMA today, there’s a good reason. We are absolutely thrilled to share news that many ...
09/02/2026

If you’ve been hearing cheers from TMA today, there’s a good reason. We are absolutely thrilled to share news that many patients, care partners, clinicians, and researchers have been working toward for years: the US Food and Drug Administration (FDA) has approved Lisraya™ (brepocitinib) for the treatment of adults with dermatomyositis (DM).

This approval marks the first oral therapy specifically indicated for dermatomyositis and the first targeted therapy approved for this rare autoimmune disease. Read the full article today! https://www.myositis.org/blog/lisraya-approved-by-fda/

Going to MyoCon 2026? Make your St. Louis experience even more memorable with an optional excursion!One exciting option:...
09/01/2026

Going to MyoCon 2026? Make your St. Louis experience even more memorable with an optional excursion!

One exciting option: Busch Stadium, Home of the St. Louis Cardinals on Thursday, September 24, from 1:00–5:00 p.m.

This guided experience includes time in the Cardinals Museum, plus a tour of iconic stadium spots like the UMB Champions Club, Redbird Club, Broadcast Booth, and Warning Track/Dugout when available. It’s a fun way to explore St. Louis, connect with fellow attendees, and kick off your MyoCon weekend with a little hometown history and baseball energy.

Excursion registration is separate from conference registration, and each trip is limited to 40 attendees, so spots are expected to fill quickly.

Registered for MyoCon? Sign up for your excursion today.

https://www.myositis.org/myositis-conference/excursions/

"People see I haven't changed a bit, except I'm in a power wheelchair."--Vance Robinson, on living with inclusion body m...
08/31/2026

"People see I haven't changed a bit, except I'm in a power wheelchair."
--Vance Robinson, on living with inclusion body myositis (IBM)

There's no approved treatment for IBM. Vance set out to change that by building a nationwide awareness campaign, one first pitch, one ballpark, one May at a time.

Read "First Pitch,” and the rest of “The Myositis Issue” of ENCORES, available in both flipbook, https://heyzine.com/flip-book/d8576c061e.html, and PDF,https://resonancefound.org/wp-content/uploads/2026/07/v2n5-ENCORES-Myositis-Summer-2026.pdf, formats. To learn more about myositis, find community support, and explore opportunities to contribute, please visit The Myositis Association.

Looking for more myositis-focused conversations before MyoCon? TMA’s YouTube channel features a special Rare Awareness R...
08/29/2026

Looking for more myositis-focused conversations before MyoCon? TMA’s YouTube channel features a special Rare Awareness Radio x TMA podcast playlist with six myositis-specific episodes. These conversations offer another way to learn, hear from voices in the community, and explore topics connected to life with myositis. Add the playlist to your watch list and spend some time with these episodes as you get ready for MyoCon 2026.

Watch now! https://youtube.com/playlist?list=PLbsqEzzgCPXA&si=0K7AYDIAbuPiTF4w

If you've been hearing cheers from TMA today, there's a good reason. We are absolutely thrilled to share news that many ...
08/27/2026

If you've been hearing cheers from TMA today, there's a good reason. We are absolutely thrilled to share news that many patients, care partners, clinicians, and researchers have been working toward for years: the US Food and Drug Administration (FDA) has approved Lisraya™ (brepocitinib) for the treatment of adults with dermatomyositis (DM). 💙 This approval marks the first oral therapy specifically indicated for dermatomyositis and the first targeted therapy approved for this rare autoimmune disease. For those of us in the myositis community, this is more than just another regulatory announcement.

Learn more at TMA's Sept. 10 Dermatomyositis Treatment Webinar sponsored by Priovant Therapeutics, and at !



https://www.fda.gov/news-events/press-announcements/fda-approves-first-oral-drug-indicated-treat-dermatomyositis-adults

Join TMA for a Dermatomyositis Treatment Webinar sponsored by Priovant Therapeutics on September 10 @ 4:00 pm - 5:00 pm ...
08/27/2026

Join TMA for a Dermatomyositis Treatment Webinar sponsored by Priovant Therapeutics on September 10 @ 4:00 pm - 5:00 pm EDT!

Are you interested in new treatments for adults with dermatomyositis (DM)? Join this educational event to hear from a patient about their own treatment experience as well as a doctor who specializes in DM treatment.

This webinar is sponsored by Priovant Therapeutics. Register today! https://www.myositis.org/event/valor-study-webinar-sponsored-by-priovant-therapeutics/

08/27/2026

MyoCon 2026 is coming to St. Louis, and we hope you’ll be there.

Join TMA September 24–27 for expert-led sessions, meaningful connections, inspiring speakers, community events, and the chance to gather with people who truly understand life with myositis.

Register today for MyoCon 2026 and make plans to join us in St. Louis.
https://www.myositis.org/myositis-conference/registration/

08/26/2026

MyoCon 2026 is bringing together an incredible lineup of speakers, including leading myositis clinicians, researchers, physical therapists, patient advocates, care partners, mental health experts, and community leaders.

From diagnosis-specific sessions and research updates to movement, dysphagia, mental health, advocacy, clinical trials, and real-life support, this year’s speakers are bringing the insight, experience, and hope our community needs.

Join us in St. Louis, September 24–27, to learn from the experts and connect with the people who understand life with myositis.

Register today for MyoCon 2026: https://www.myositis.org/myositis-conference/registration/

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