We Care for Rare Summit
Celebrating Myositis Science and Patient Stories on Rare Disease Day
Friday, February 28, 2025, 1:00-4:00 PM ET
An alternative Rare Disease Day celebration hosted by The Myositis Association (TMA), Myositis International Health and Research Collaborative Alliance (MIHRA), and Nori’s Fight
Friday, February 28, 2025 | 1:00-3:00 PM ET
Tentative 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!
Join our dazzle of myositis zebras for conversation, fellowship, and fun to celebrate Rare Disease Day. Facilitated by Linda Zuchegna, TMA Nationwide Support Group Co-Leader.