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Digital Academy

This webinar is essential for meeting attendees and will cover everything you need to know to make an impact on the FDA.

Patient Focused Drug Development (PFDD) meeting: This year at our annual conference MDF will host the first community meeting focused on the Food and Drug Administration (FDA). MDF community members will educate the FDA and other federal agency representatives about symptoms and disease issues that are most important to patients and families, and guide their thinking on DM drug review. The FDA wants to understand which benefits patients seek from therapies and what risks they might be willing to accept to gain specific benefits.

Community members with DM2 discuss best practices for daily living strategies as well as the best ways to advocate for yourself in the clinic.

Please note: this is an audio recording only. To see the accompanying presentation, please click here.

Dr. Richard Moxley of the University of Rochester addresses different endocrine problems that challenge patients with mytonic dystrophy types 1 & 2, how they can lead to symptoms and be associated with alterations in blood test measurements, known treatments to mitigate potential symptoms and future opportunities to develop better understanding of these endocrine problems.

Community-led session presented by Lindsay Baran, Josh Crowder, and Leslie Krongold, EdD. Community members discuss the challenges of maintaining independence as DM progresses.

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Community-led panel presented by John Brekka, Bob Crowder, and Andrea Hershman. Community members with DM2 discuss pain management options, both holistic and pharmaceutical.

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