DuchenneConnect Twitter Chat on Thursday, October 20 at 1PM EST

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. 

Featured guests: 


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:

  • You can think of a twitter chat as a “virtual” conversation in real time with anyone around the world who would like to join in. 
  • If you are interested in a particular chat, once you are on twitter, just search using the hashtag that is provided for that chat. We are using #DuchenneConnectTC. By including this hashtag with every tweet during the chat, everyone can see what each other is saying.
  • To get the discussion going, we will pose questions throughout the chat.
  • Each question will be numbered, such as Q1, Q2, etc.
  • When you respond to a question, please make sure to use the letter “A” and the appropriate number.
  • For instance, if question #1 (Q1) is something you want to respond to, then start your tweet with A1 and then put your response followed by #DuchenneConnectTC.

 

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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