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2020 MDA Engage Pompe Disease Symposium

July 12, 2020
Time: 11:00am - 4:45pm ET
Virtual, online event

There is no cost to members of the MDA community or clinicians to attend the event, however, registration is required.

Event Chair: Dr. Heather A. Lau, Director of the Lysosomal Storage Disease Program, NYU Langone Health

Agenda

Welcome (11:00am ET)
- Elise Qvale, MDA
The COVID-19 Impact (11:05am ET)
- Dr. Heather A. Lau, NYU Langone Health
Research and Clinical Trials (11:25am ET)
- Dr. Heather A. Lau, NYU Langone Health
Drug Development Roundtable (12:20pm ET)
- Moderator: Dr. Heather A. Lau, NYU Langone Health
- Panelist: Dr. Barry Byrne (UF Health), Sean Doerr (family), Mark Lyles, MD (Amicus), Amy Fisher (Spark Therapeutics)
Best Practices and Future Considerations for Clinical Care of Pompe
- Stephanie Austin, MS, MA, CGC, Duke University Medical Center
Genetics and Pompe (2:15pm ET)
- Kara Anstett, MS, CGS, NYU Langone Health
PT and Exercise (3:00pm ET)
- Laura Case, PT, DPT, MS, PCS, C/NDT, Duke University Medical Center
Nutritional Considerations in Pompe (3:30pm ET)
- Surekha Pendyal, Msc, MEd, RD, FAND, Duke University Medical Center
MDA Spotlight (4:00pm ET)
- Elise Qvale, MDA
Raise your voice through grassroots advocacy (4:15pm ET)
- Brittany Johnson Hernandez and Mark Fisher, MDA

On Monday, July 13, the MDA will be hosting a Pompe disease Patient Focused Drug Development (PFDD) Meeting virtually online. We encourage Engage attendees to also attend the PFDD meeting. For information on the PFDD meeting, and to register, click here.