The FDA Listening Session on Adult Dermatomyositis summary is now available!

MSU hosted our first-ever FDA Listening Session on Adult Dermatomyositis on April 26, 2022. This was an opportunity to facilitate the sharing of the patient perspective with FDA staff from 12 different offices and departments.

This patient-focused session was centered around the unique stories of dermatomyositis patients and caregivers. Our intent was to give the FDA an appreciation of the diversity of disease manifestations while highlighting the lack of effective treatments and underscoring the need for improved and accessible clinical trial designs.

Dermatomyositis (DM) is a rare, severe, and debilitating systemic autoimmune disorder with different autoantibodies and prognoses. Seeing DM currently as a single disease is incorrect.

Every patient’s journey is different and carries different burdens, paralleling the clinical heterogeneity with which DM presents and progresses. Only through the lens of each patient’s life experiences can we find ways to provide better care management and improve the quality of life for patients, caregivers, and families impacted by dermatomyositis.

This summary is also provided on the Patient Listening Session Summaries page at the FDA.

View the FDA session summary (PDF)

Watch the recording of our Fireside Chat, The Power of Your Voice: FDA Listening Session on Adult Dermatomyositis

We invited all of the patient and caregiver speakers and MSU representatives that were involved to go behind the scenes of what it took to host the first-ever FDA Listening Session on Adult Dermatomyositis. In this fireside chat, we talk about what we learned, what the experience was like, and much more.

Watch the recording
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Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

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