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pompediseasefamily · Pompe Disease
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Group Information

  • Members: 21
  • Category: Support
  • Founded: Aug 26, 2006
  • Language: English
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This group is welcome to all individuals, families, friends who have been affected by Pompe Disease. Please share your stories, thoughts, input, or concerns with others who share a similar experience.
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Lumizyme reactiions
Yesterday, the second girl that received for the first time Lumizyme, also presented reactions, although less severe than my daughter.   She got nauseas and
Posted - Wed Apr 11, 2012 4:13 pm
 Jorge Romero
jorgeromero51
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Re: Yamila, March 12
This is awesome. What a beautiful personality. Mia is so shy, I cannot imagine her ever that outgoing, lol. To: jorgeromero51@... From:
Posted - Mon Apr 9, 2012 5:30 pm
 Dawn Hanley
miasmama6
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Yamila, March 12
Yamila is growing and showing improvements in her condition. Here in a recent concert in her school.  
Posted - Mon Apr 9, 2012 6:35 am
 Jorge Romero
jorgeromero51
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New treatment for Pompe
It's a good news for our families. http://www.sunherald.com/2012/02/27/3779124/angiochem-forms-collaboration.html#storylink=misearch  It's a good news for our
Posted - Tue Feb 28, 2012 3:55 pm
 Jorge Romero
jorgeromero51
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(No subject)
Hi Suchen Tsai: The reason that we move a lot it's because we have to deal with insurance issues; and mainly we ask for help to the Doctors that are interested
Posted - Mon Feb 20, 2012 5:30 pm
 Jorge Romero
jorgromero51@...
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Message History

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
2012 4 2 3
2011 10 4
2010 4 1 9 3 1 2
2009 2 1 2 11 6
2008 1 1 1
2007 9 1 1 2 1 1 1 3 2
2006 3 2 1
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