TMA was honored to partner with Myositis Support and Understanding (MSU) to host the Externally Led Patient Focused Drug Development (PFDD) meeting for adult dermatomyositis (DM) on June 7.

View the replay of this important day online.

Through the PFDD, we captured DM patients’ experience, perspectives, and needs. The program was designed to inform the development of new treatments and their approval by the US Food and Drug Administration (FDA). An extraordinary 32 members of the FDA staff were in attendance that Friday!

The day’s agenda included:

  • Patient and Caregiver Panel: Symptoms and Daily Impact
  • Patient and Caregiver Panel: Current and Future Approaches to Treatments
  • FDA Opening Remarks: Dr. Raj Nair, Acting Director for the Division of Rheumatology and Transplant Medicine
  • Clinical Overview: Dr. Lisa Christopher-Stine, Director, Johns Hopkins Myositis Precision Center of Excellence, Professor of Medicine
  • Treatment Overview: Dr. Rohit Aggarwal, Co-Director, UPMC Myositis Center, Professor of Medicine

Thank you to the patient and caregiver panelists who shared their stories and responded to questions: Jerome Belin, Romy Braunstein, Coreen Canaan, Yashira Cruz-Tirado, Austin Cypersmith, Veronica Fatura, Emily Filmore, Kaniah Gunter, Ali Gutierrez, Hannah Hay, Cheri Miracle, Stephen Moore, Shawna Nielsen, Linda Rabinowitz, Eric Rocheleau, Kambiz Roghanci, Barbara Shaw, and Lisa Sniderman.

Organizing a PFDD is a significant effort, and we are grateful to all those who played a role. On behalf of MSU and TMA, a heartfelt thank you to our industry sponsors: Amgen, argenX, CSL Behring, Galapagos, Janssen, and Priovant for their generous support.

And, thank you to our attendees whose lives have been directly impacted by DM. More than 200 individuals registered to attend the meeting—an incredible turnout with wonderful engagement throughout the program!

You can still raise your voice!

Testimonials and survey responses are essential in crafting the “Voice of the Patient” report that will serve as the official record of our PFDD. Submit written comments or participate in the DM survey online no later than Monday, July 8.

How does dermatomyositis affect you on your best and worst days?
What worries and frustrates you most about your condition?
What are the most significant downsides to your current treatments?

Learn more about the recent PFDD on the TMA blog, whereTMA Board member and DM patient Jane Myles shared her takeaways in “Dermatomyositis: A many-headed monster.”

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