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	<title>The Addi and Cassi Fund - Niemann Pick Type C &#187; HealthCare</title>
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	<description>Treatments &#38; Cures for Niemann Pick Type C - Childhood Alzheimer&#039;s</description>
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		<title>Social Security Disability &#8216;Compassionate Allowance&#8217; &#8211; Only For Those Who are Impoverished?</title>
		<link>http://addiandcassi.com/social-security-disability-compassionate-allowance-requirements/</link>
		<comments>http://addiandcassi.com/social-security-disability-compassionate-allowance-requirements/#comments</comments>
		<pubDate>Sat, 06 Mar 2010 02:13:14 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Health Care Policy]]></category>
		<category><![CDATA[Compassionate Allowance Program]]></category>
		<category><![CDATA[National Organization for Rare Disorders]]></category>
		<category><![CDATA[Nevada]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[Social Security]]></category>
		<category><![CDATA[Social Security Disability]]></category>
		<category><![CDATA[Social Security State Listings]]></category>

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		<description><![CDATA[Today I called the Social Security Office in Nevada to find out about the compassionate allowance program for our twins. Last month, the Social Security Administration added 38 more conditions to the already 50 rare diseases and cancers designated for compassionate allowance, which provides expedited review of disability applications from people with severely disabling conditions. [...]]]></description>
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		<slash:comments>2</slash:comments>
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		<title>Rare Disease Idea Leads &#8216;Ideas For Change In America&#8217; Competition by Change.org</title>
		<link>http://addiandcassi.com/rare-disease-idea-leads-ideas-for-change-in-america-competition-by-change-org/</link>
		<comments>http://addiandcassi.com/rare-disease-idea-leads-ideas-for-change-in-america-competition-by-change-org/#comments</comments>
		<pubDate>Thu, 04 Mar 2010 04:42:35 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Health Care Policy]]></category>
		<category><![CDATA[Change.org]]></category>
		<category><![CDATA[Ideas For Change In America Winner]]></category>
		<category><![CDATA[Obama Administration]]></category>
		<category><![CDATA[rare disease]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=2623</guid>
		<description><![CDATA[Ideas for Change in America is a competition that empowers citizens to identify and build momentum around a diverse range of ideas for addressing the challenges our country faces. From January &#8211; February 2010, more than 2,500 ideas were submitted and voted on by 100,000 people across the country. The top three rated ideas from [...]]]></description>
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		<slash:comments>0</slash:comments>
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		<title>FDA and EMA Forge Rare Disease Collaboration; Announcement Coincides with World Rare Disease Day 2010</title>
		<link>http://addiandcassi.com/fda-and-ema-forge-rare-disease-collaboration-announcement-coincides-with-world-rare-disease-day-2010/</link>
		<comments>http://addiandcassi.com/fda-and-ema-forge-rare-disease-collaboration-announcement-coincides-with-world-rare-disease-day-2010/#comments</comments>
		<pubDate>Mon, 01 Mar 2010 02:11:37 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[Health Care Policy]]></category>
		<category><![CDATA[Dr. Jordi Llinares]]></category>
		<category><![CDATA[Dr. Timothy Cote]]></category>
		<category><![CDATA[EMA]]></category>
		<category><![CDATA[European Medicines Agency]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[Office of Orphan Products Development]]></category>
		<category><![CDATA[U.S. Food and Drug Administration]]></category>
		<category><![CDATA[World Rare Disease Day]]></category>

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		<description><![CDATA[In recognition of World Rare Disease Day 2010, the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) announced that they will collaborate together and now accept a single annual report from sponsors with an orphan drug designation for rare medical conditions. The joint announcement was made by Dr. Timothy Cote, director [...]]]></description>
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		<title>Sign and Circulate Jamie Heywood&#8217;s Declaration of Health Data Rights Petition Today</title>
		<link>http://addiandcassi.com/sign-and-circulate-jamie-heywoods-declaration-of-health-data-rights-petition-today/</link>
		<comments>http://addiandcassi.com/sign-and-circulate-jamie-heywoods-declaration-of-health-data-rights-petition-today/#comments</comments>
		<pubDate>Sun, 27 Sep 2009 01:05:24 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[HealthCare]]></category>
		<category><![CDATA[Declaration of Health Data Rights]]></category>
		<category><![CDATA[electronic medical records]]></category>
		<category><![CDATA[Health Data Rights]]></category>
		<category><![CDATA[Hippa Laws]]></category>
		<category><![CDATA[Jamie Heywood]]></category>
		<category><![CDATA[PatientsLikeMe]]></category>
		<category><![CDATA[Wired Magazine]]></category>

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		<description><![CDATA[Wired Magazine is running a great article about Jamie Heywood, co-founder of PatientsLikeMe, and his quest to make personal medical records electronic and easily accessible online. Heywood is behind HealthDataRights.org, a movement to declare our individual right to have and share our health data. Heywood has started the Declaration of Health Data Rights petition and [...]]]></description>
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		<slash:comments>9</slash:comments>
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		<title>CNN Covers How California Health Care Budget Cuts Threaten Life of Little Girl Suffering From Deadly Cholesterol Disease</title>
		<link>http://addiandcassi.com/cnn-covers-how-california-health-care-budget-cuts-threaten-life-of-little-girl-suffering-from-deadly-cholesterol-disease/</link>
		<comments>http://addiandcassi.com/cnn-covers-how-california-health-care-budget-cuts-threaten-life-of-little-girl-suffering-from-deadly-cholesterol-disease/#comments</comments>
		<pubDate>Wed, 05 Aug 2009 19:49:21 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Health Care Policy]]></category>
		<category><![CDATA[Videos]]></category>
		<category><![CDATA[California budget crisis]]></category>
		<category><![CDATA[Caring Connection]]></category>
		<category><![CDATA[Cholesterol]]></category>
		<category><![CDATA[CNN]]></category>
		<category><![CDATA[Dementia]]></category>
		<category><![CDATA[Governor Arnold Schwarzenegger]]></category>
		<category><![CDATA[Jessica Leoni]]></category>
		<category><![CDATA[Los Angeles]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[seizures]]></category>
		<category><![CDATA[Westside Regional Center]]></category>

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		<description><![CDATA[Embedded video from CNN Video Here is a story on sweet little Jessica Leoni who suffers from the same disease as Addi and Cassi. Her health care is being threatened by California&#8217;s Health Care crisis. Here is the story from CNN. LOS ANGELES, California (CNN) &#8212; Anthony and Lisa Leoni have little time to worry [...]]]></description>
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		<slash:comments>4</slash:comments>
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