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...
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 tma@myositis.org to let us know where you are participating. Visit TMA's website for more events honoring...
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...
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...
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...
Take the myositis awareness message year-round with new TMA merchandise for you and your furry friends! Order deadline is May 8, 2026. Eight designs are available with multiple styles, colors, and sizes. Your order will ship directly to you at the end of May from Custom Ink. We'd love to be tagged on social media...
May is Myositis Awareness Month! It’s a time for the myositis community to raise our collective voices and let the world know what this rare disease is all about. It’s TMA’s mission to support those who live with myositis and their care partners by bringing awareness, sharing resources and education, sharing strategies for advocacy, and building...
Honey Dee - May is "Myositis Awareness" Month and I am here to help get the word out for all of those affected by this rare disease. Watch for merchandise available in the CartoonGems online store to show your support for those affected. During the month of May ALL proceeds from "Myositis Awareness" merchandise will...
Chip in for a great cause during Myositis Awareness Month at our TMA Open! Register Now! Support myositis research and patient well-being on Friday, May 1 at 9:00 AM (check-in 8:00 AM) at Blue Ridge Shadows Golf Course in Front Royal, VA. Format: Captain’s Choice Price: Teams $500 | Individual $150 | Virtual golfers welcome!...
In recognition of Myositis Awareness Month and IMNM Diagnosis Day, The Myositis Association (TMA) invites you to a special Ask the Expert webinar focused on Immune-Mediated Necrotizing Myopathy (IMNM). This program will feature Dr. Andy Mammen, Chief of the Muscle Disease Unit at the National Institutes of Health (NIH), who will share expert insights on...
In honor of Diagnosis Days during Myositis Awareness Month this May, join us for a special Café Chat focused on Dermatomyositis (DM). This relaxed, informal gathering is a space to connect with others who truly understand the DM journey. We’ll be sharing stories of the day we were diagnosed—the moments, emotions, and experiences that shaped...
Please join us for the third annual C Potter Classic with kids and adults softball game, stadium food/pizza, tailgating, beers, and fun. All in honor of our lovely Carolyn. All proceeds to The Myositis Association.