TMA encourages all of our members to participate in rare disease awareness and advocacy. Beyond Myositis Awareness Month and World Myositis Day, there are opportunities for myositis advocates to participate in broader observances.
Rare Disease Day is one of those important awareness opportunities. Rare Disease Day is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. It takes place on the last day of February, which this year is February 28, 2025.
When the NIH and FDA postponed their two-day event to raise awareness of rare diseases, TMA quickly pivoted to create an alternative Rare Disease Day celebration on Friday, February 28 hosted by The Myositis Association (TMA), Myositis International Health and Research Collaborative Alliance (MIHRA), and Nori’s Fight.
We Care for Rare Summit
Celebrating Myositis Science and Patient Stories on Rare Disease Day
Watch this amazing two-hour session featuring members of the global myositis scientific community and poignant stories from TMA members.
Agenda
Pride in Rare Disease and Standing Together for Science
Presentation and reactions illuminating the context of rare disease; how common rare diseases are, collectively; and how much rare research affects all of health care.
Flash Talks in Myositis Science
A series of short, exciting presentations highlighting patient-driven research in myositis.
Flash Talk in Myositis Science and Myositis ILD Patient Story
Keynote Speaker and Dermatomyositis Patient Story – “The Full-Time Job of Living Rare”
Lindsay Guentzel, Multimedia Journalist, Storyteller, Myositis Advocate, and TMA Leader
Closing Remarks by Alli Ward, Director of Membership at National Organization for Rare Disorders (NORD)
We Share Our Rare Virtual Happy Hour: Let’s Show Our Myositis Stripes!
Our dazzle of myositis zebras hung around for conversation, fellowship, and fun to celebrate Rare Disease Day. Facilitated by Linda Zuchegna, TMA Nationwide Support Group Co-Leader and licensed mental health professional.
How do you navigate your rare?
TMA asked you to tell us what you and your family do to manage your rare medical journey in myositis, and of course you came through with dozens of suggestions for overcoming isolation, connecting with others, making your rare experience easier, and encouraging words. Take a look at this helpful collection of resources.
Rare Disease Day at the FDA-NIH IS “POSTPONED” BY THE ORGANIZERS
From the RDD website: “After much consideration, we are postponing FDA-NIH Rare Disease Day 2025 and will reschedule it to occur in the coming months. Rare Disease Day is important to all of us, and we want to make sure we can fully focus on the event to make it the best that it can be. We appreciate your understanding and thank you for your continued work raising awareness, developing cures and treatments, and offering resources that give hope to the millions of people in this country affected by rare diseases.”
View the recording of TMA’s Rare Disease Month Empowerment Clinic
On Thursday, February 20, 2025, award-winning journalist, writer, and advocate Lindsay Guentzel shared her rare journey and offered tips for how others with rare diseases can create a winning narrative that that those who don’t live with these conditions can still connect with.
“60 Seconds to Impact: Sharing Your Story with Purpose.”
We’ve put together a special Rare Disease Day YouTube playlist filled with expert insights, real patient stories, and practical resources.
Whether you need advice, encouragement, or simply a reminder that you’re not alone, these videos are here for you. Watch now and share with someone who might need it.
Check Out Even More Events for Rare Disease Month, Week, & Day
Rare Disease Week takes place February 24-26, 2025, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases). Events in Washington, DC bring together rare disease advocates to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress.
Many Rare Disease Month, Week, and Day events are held across the world. Find an event near you, and learn more about how to Show Your Stripes® for Rare Disease Day® with NORD®.
Help Us Raise $5,000 for TMA’s Patient Conference Scholarship Fund
Attending TMA’s International Annual 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 24-28, 2025, our goal is to bring together 50 donors and raise $5,000 to provide conference scholarships. Your donation, no matter the size, helps bring hope and connection to patients who need it most. Give today and help us reach our goal.
