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Featured
Celebrate Rare Disease Day all month with rare disease events from TMA, FDA, and NIH! Rare Disease Day is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. To see the list of events, visit our Rare Disease Awareness page: Rare Disease Awareness - The Myositis... |
2 events,Γνωρίστε άλλους σαν εσάς, μάθετε, μοιραστείτε και συνδεθείτε! Συναντιόμαστε κάθε μήνα την πρώτη Δευτέρα. Εγγραφείτε εδώ |
2 events,
Register Here Join TMA's Flying Solo Affinity Group: Support for Those Living with Myositis Without a Live-In Care Partner The TMA Flying Solo Affinity Group is a dedicated space for individuals diagnosed with myositis who do not have a live-in care partner. Whether you live alone, are married but your spouse is unable to provide... |
2 events,
Register Here Join TMA’s Women of Color Affinity Group: Empowerment Through Support & Advocacy Founded in 2019 by Holly Jones and Kaniah Gunter, TMA’s Women of Color (WOC) Affinity Group is a vibrant support and advocacy community dedicated to uplifting women of color living with myositis. Through the powerful 3E’s—Encouragement, Education, and Empowerment—our mission is to... |
5 events,This group welcomes all Florida residents (and snowbirds) with myositis and their care partners to attend. This group meets four times a year in hybrid format (in-person and on zoom) every three months on the first Saturday from 11 AM-3 PM ET. Register Here TMA support groups are a place to connect, be understood, and... 
TMA’s Worldwide Myositis Support by Diagnosis Group is open to all, especially those without an active support group in their local area. Formally known as Nationwide, this group has hosted international members since its inception in 2022. The meeting divides into breakout rooms by diagnosis, and the TMA Care Partner Affinity Group meets in its own... 
Please note there will be no July meeting to allow our volunteers to celebrate the holiday with their families. Join the TMA Care Partner Affinity Group: A Space Just for You Being a care partner to someone with myositis can be emotionally and physically challenging. Whether it’s dealing with stress, anxiety, or the weight of... |
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2 events,TMA Tennessee meets on the second Sunday of each month at 3:00 PM CT | 4:00 PM ET. Email leader Sharon Hinton at [email protected]. Register here. |
5 events,
Virtual Event
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Virtual Event
Register Here When you join a clinical trial, you’re paired with a clinical trial representative who becomes your primary guide throughout the study. But what exactly does this role include—and how can you build a strong, effective partnership? In this webinar, Mercedes Herrera, an experienced Clinical Research Coordinator with the UCI Center for Clinical Research,... 
The HSS Myositis Support Group is open to people living with myositis, their families, and friends. If this is your first time attending the HSS group meeting, please be sure to contact the group coordinator before the meeting date in order to receive the join link. PLEASE RSVP TO SUZAN BEFORE THE MEETING DATE: Suzan... 
Register Here Join the TMA Minnesota & Wisconsin Myositis Support Group: Connect, Share, and Find Support The TMA Minnesota & Wisconsin Myositis Support Group offers a welcoming space for individuals living with myositis to connect, share experiences, and support one another. Meeting every two months on the first Tuesday at 6:00 PM CT, this group... |
2 events,
Featured
Virtual Event
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Featured
Virtual Event
Learn more about TMA’s Proclamation50 Initiative, our aspiration to spur proclamations in all 50 states in the US for Myositis Awareness Month in May! A proclamation is an official declaration by a government recognizing the importance of understanding, diagnosing, and supporting those affected by these rare diseases. On February 11th at 6 pm ET, Jamie Batiste, our... |
3 events,Founded in 2022, the TMA Military Veterans with Myositis Affinity Group is a dedicated space for veterans living with myositis to find support, share experiences, and engage in advocacy efforts. This group is particularly focused on working towards making Inclusion Body Myositis (IBM) a presumptive condition within the VA, and provides invaluable resources for navigating... This group for all myositis diagnoses meets monthly on the second Saturday. TMA support groups are a place to connect, be understood, and feel less alone — whether you’re seeking support, offering encouragement, or somewhere in between. Research shows that peer support can increase feelings of belonging by up to 70% and improve overall well-being... |
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3 events,
Created in 2020, the mission of TMA WomenwithIBM Affinity Group is to improve the lives of women with inclusion body myositis through virtual connections and support that transcends geography. Meets on the third Tuesday of most months at 12 PM ET | 11 AM CT | 10 AM MT | 9 AM PT. February's meeting...
Virtual Event
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Virtual Event
Join us for an informative and supportive Ask the Expert webinar featuring Dr. Suur Biliciler, a specialist in neuromuscular disorders and myositis care. This session will explore key aspects of diagnosis, treatment options, and symptom management for individuals affected by myositis. Dr. Biliciler will share her clinical insights and answer audience questions in real time... |
4 events,The TMA Missouri & Illinois Myositis Support Group is a welcoming space for individuals living with myositis. Meeting every month on the third Thursday at 6:30 PM CT, this group provides a supportive environment to connect, share experiences, and learn from others facing similar challenges. Register Here Whether you're newly diagnosed or have been managing... 
All are welcome. Register today! It’s not unusual to feel isolated and alone with a disease that no one has ever heard of and doesn’t understand. Being part of a myositis support group is an important way to share these feelings with people who know exactly what you’re going through. Research shows that this sort... |
2 events,
Register here! Join the TMA Northern California, Oregon & Washington IBM Support Group: Connect, Learn, and Find Support This group is a welcoming community for individuals living with Inclusion Body Myositis (IBM) in Northern California, Oregon & Washington, although all are welcome. Meeting every month on the third Friday at 5:00 PM PT, this group... |
3 events,The TMA MD, DE, DC, and Northern Virginia Myositis Support Group is a welcoming space for individuals living with myositis in the Maryland, Delaware, District of Columbia, and Northern Virginia regions. Meeting every two months on the third Saturday at 1:00 PM ET, this group provides a supportive environment to connect, share experiences, and learn... 
Virtual Event
Help Us Raise $5,000 for TMA’s Patient Conference Scholarship Fund Attending MyoCon: TMA's Global Myositis Patient Conference is a life-changing experience for those living with myositis and their families, providing education, support, and a sense of community. This year, for Rare Disease Week, February 23-27, 2026, our goal is to bring together 50 donors and... |
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3 events,TMA is proud to host the Rainbow Affinity Group, a vital support community designed specifically for LGBTQIA+ individuals living with myositis. Founded in 2022, this group offers a unique space to connect with others who share both a myositis diagnosis and a commitment to fostering inclusivity and respect within healthcare and beyond. Register Here In... |
4 events,
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The FDA will host “Moving Forward. Looking Ahead. An Event for Patients" for Rare Disease Day. Join this virtual public meeting on Monday, February 23, 2026, in global observance of Rare Disease Week. Learn More. Are you participating in a Rare Disease Day event? Please email [email protected] to let us know where you are participating. Visit TMA's website for more events honoring...
Virtual Event
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Virtual Event
Register here Join the TMA Northern California Myositis Support Group: A Community for Those Living with Auto-Immune Myositis The TMA Northern California Myositis Support Group is a vital resource for individuals living with autoimmune types of myositis, including Antisynthetase Syndrome (ASyS), Dermatomyositis (DM), Interstitial Lung Disease (ILD), Juvenile Myositis (JM, JDM), Melanoma Differentiation-Associated Gene 5... |
4 events,
This free multi-day event, hosted by the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, brings together rare disease advocates from across the country to make their voices heard with their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate... The TMA Men Managing Myositis Affinity Group is a supportive space for men with any form of myositis to connect, share experiences, and find solidarity. Founded in 2022 and led by Eric Rocheleau, this group offers a unique opportunity to engage in meaningful discussions about the challenges specific to men living with myositis. Each month,... |
4 events,This group meets monthly on the fourth Thursday at 6:00 PM ET. For all myositis diagnoses. Register here Why Attend a TMA Support Group TMA support groups are a place to connect, be understood, and feel less alone — whether you’re seeking support, offering encouragement, or somewhere in between. Research shows that peer support can... |
3 events,
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On Friday, February 27, 2026, from 9 AM to 5 PM ET, the NIH will host Rare Disease Day 2026, both in-person at the NIH main campus (Natcher Conference Center) and virtually via NIH VideoCast. Be sure to stop by and say hello to the TMA team at our myositis exhibit table at the NIH. For more information... |
5 events,
Featured
Rare Disease Journeys Community Survey For Rare Disease Day on February 28th, 2026, TMA wants to hear from you! Share your tips for navigating a rare medical journey in myositis and what you and your family do to overcome isolation, connect with others, and make your rare experience easier. Share your story here. Are you... 
Register Here Attend TMA Northeast Texas Myositis Support Group: Support for Those Living with Myositis and their Care Partners Living with myositis is easier with friends. TMA's support and affinity groups offer a community where you can connect with others who truly understand your unique circumstances. Share experiences, find helpful resources, and gain insights on... 
👉 Register here TMA Georgia Myositis Support Group meets every fourth Saturday from 10:30–11:30 AM ET, except December. Peer-led support groups matter at every stage of the journey. Even if you’re currently thriving, your presence and story can bring hope and reassurance to others who may be facing challenges. At TMA, we pride ourselves on... |