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	<title>Dysautonomia &#8211; SaintPetersBlog</title>
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		<title>Gus Bilirakis: Giving a voice to rare disease patients</title>
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		<dc:creator><![CDATA[Guest Author]]></dc:creator>
		<pubDate>Fri, 25 Nov 2016 10:00:07 +0000</pubDate>
				<category><![CDATA[Statewide]]></category>
		<category><![CDATA[Top Headlines]]></category>
		<category><![CDATA[21st Century Cures Act]]></category>
		<category><![CDATA[chronic diseases]]></category>
		<category><![CDATA[Dysautonomia]]></category>
		<category><![CDATA[Moffitt Cancer Center]]></category>
		<category><![CDATA[OPEN Act]]></category>
		<category><![CDATA[Rare diseases]]></category>
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					<description><![CDATA[Two years ago, I held a series of roundtable meetings in Lutz, Florida with physicians, advocates, patients, and families from our area to hear about the challenges of finding cures for the thousands of deadly and chronic diseases impacting millions of Americans. Diseases like cancer, ALS, Alzheimer’s and the 7,000 rare conditions. These discussions were eye-opening to me. I got a true sense of how difficult it is to get new medicines to market, and how painful it can be&#8230;]]></description>
		
		
		
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