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glutaric_acidemia · International Organization of Glutaric Acidemia

Group Information

  • Members: 123
  • Category: Support
  • Founded: Apr 6, 2004
  • Language: English
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Description

The International Organization of Glutaric Acidemia (IOGA) is an international, voluntary, and non-profit organization dedicated to promoting early detection, preventing neurological damage, and assisting in the treatment and rehabilitation of those affected by Glutaric Aciduria Type I (GA1) and other neurological diseases. Established in 1995 and consisting of approximately 100 members, IOGA engages in patient advocacy and support, offers family networking services, promotes research, offers medical referrals, and engages in patient education. Educational materials include medical journal article reprints, brochures, a web site, and a regular newsletter.

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Re: Homoarginine
Here is the study done with mice, http://brain.oxfordjournals.org/cgi/content/abstract/129/4/899. Dr. Zinnati did a presentation at the OAA conference in
Posted - Thu Nov 5, 2009 10:55 pm
Dena H
mygirlskhs
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Homoarginine
Hi, I have been talking to my Dr and reading about novel treatments for GA1 and I hear alot about homoarginine. Has anyone heard anything about the possible
Posted - Thu Nov 5, 2009 5:38 am
yakoodle
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Re: New diagnosis
Hello Sara, My 12 year old, who I adopted aged 18 months has GA1. He was just diagnosed when he came to me so I remember some of what you will be going through
Posted - Thu Oct 15, 2009 12:04 pm
janie6813
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Re: GA1 Kiddo in News
Tracy,   Lily tried one out before, and some things worked great and others not so much.  However, with the kiddos it has worked for - it's been excellent! 
Posted - Thu Oct 15, 2009 4:02 am
Sarah Kordis
sarah.kordis
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Re: GA1 Kiddo in News
Corrina,   That's awesome, great work!  Thank you for sharing your journey!  Our family, including another family I know, are applying to the foundation
Posted - Thu Oct 15, 2009 3:59 am
Sarah Kordis
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Message History

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
2009 24 74 12 18 10 9 17 1 15 9 2
2008 2 43 4 1 53 52 5 15 27 10 18 6
2007 45 109 47 71 17 29 48 34 51 36 44 35
2006 23 16 49 59 19 81 17 13 49 42 23 2
2005 1 37 41 74 85 87 34 46 64 111 7 28
2004 24 11 32 5 6 18 3 9 1
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