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Sharing Resources ( #HAWMC Day 4)

Posted Apr 04 2013 9:10pm
When Anna was first diagnosed with MSUD, the internet was not as accessible as it is now, and the entries in medical books at the library were very negative.  Now there are far more resources available to help parents with newly diagnosed MSUD babies. 

The MSUD Support Group has been the best resource for us over the past 15 years.  Dealing with a rare disease like MSUD can make you feel very alone.  The support group provides a community of people from all over the world who know exactly what you are experiencing.  The site also provides an archive of the group's newsletters, which provides articles written by doctors and dietitians about the latest treatments and research. I honestly can't imagine how we could have made it through our years of living with MSUD if we had not had the support group.
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