Join us for our first DuchenneConnect Twitter chat on Thursday, Oct 20, 2016 from 1-2:00 PM EST. We will be using the hashtag #DuchenneConnectTC.
Our first chat will cover the importance of PPMD's patient registry, DuchenneConnect. Not only will we try to focus on what we do with the data that patients and families input but we also want to help everyone understand why this data is so important to Duchenne community.
Our special guests will be Dr. Richard Wang and Dr. Stan Nelson, both from UCLA. Dr. Nelson and Dr. Wang have been partners with the Registry for many years and will answer questions about how they have used DuchenneConnect data and ways we could think about using it in the future.
We will also have DuchenneConnect Family advisors Alan Chaluet, Ben Dupree, and Brian Denger joining to tell us about why the feel the Registry is so important.
If you are new to Twitter or Twitter chats, here are a few housekeeping items:
Even if you can’t join us on the 20th, these tweets will be available afterwards so that everyone can see what was discussed. Everyone is welcome to join in and feel free to ask the “panelist” questions of your own. Our goal is to help people understand the importance of the Registry and make sure your questions are answered.
We look forward to chatting with you soon!
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