http://www.raredr.com/conferences/pompe2017/texas-vs-minnesota
Texas vs Minnesota: Which is the better rare disease state?

Karen Kacures



At the late-onset Pompe disease patient clinic recently held at Duke University, we talked with Karen Kacures about her condition and how it is managed in the two states she lives in - Minnesota and Texas.
 
As Karen explains in this video clip, she spends her summers in Minnesota and her winters in Texas. And while she prefers the Texas winters to Minnesota’s winters, she does find that the northern state does have a more organized approach to managing patients with Pompe disease. At the University of Minnesota, the care is a multidisciplinary approach (much like Duke’s) whereas in Texas (in the Austin area), Karen finds that the doctors are not familiar with the condition and she spends part of her doctor visits telling the doctors about the condition.
 
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