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	<title>The Global Genes Project</title>
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	<link>http://globalgenes.org</link>
	<description>Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions</description>
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		<title>How Can You Prevent a Seizure From Happening?</title>
		<link>http://globalgenes.org/how-can-you-prevent-a-seizure-from-happening/</link>
		<comments>http://globalgenes.org/how-can-you-prevent-a-seizure-from-happening/#comments</comments>
		<pubDate>Wed, 22 May 2013 15:33:03 +0000</pubDate>
		<dc:creator>Guest Blogger</dc:creator>
				<category><![CDATA[Guest Bloggers]]></category>
		<category><![CDATA[epilepsy]]></category>
		<category><![CDATA[seizures]]></category>
		<category><![CDATA[susan noble]]></category>
		<category><![CDATA[The Epilepsy Warriors Foundation]]></category>

		<guid isPermaLink="false">http://globalgenes.org/?p=29370</guid>
		<description><![CDATA[Our first post gave information on the definition of epilepsy and &#8220;What To Do If Someone Has a Seizure,&#8221; so next you may be wondering can it be prevented? At present, the only way of preventing epilepsy is by reducing risks from things that damage [...]]]></description>
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		<slash:comments>0</slash:comments>
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		<item>
		<title>A Child&#8217;s Rare and Undiagnosed Illness: Listen in Today at 6:00PM</title>
		<link>http://globalgenes.org/a-childs-rare-and-undiagnosed-illness-listen-in-today-at-600pm/</link>
		<comments>http://globalgenes.org/a-childs-rare-and-undiagnosed-illness-listen-in-today-at-600pm/#comments</comments>
		<pubDate>Wed, 22 May 2013 12:47:41 +0000</pubDate>
		<dc:creator>Ilana Jacqueline</dc:creator>
				<category><![CDATA[Breaking News]]></category>
		<category><![CDATA[Heather Long]]></category>
		<category><![CDATA[Patient Advocates]]></category>
		<category><![CDATA[Undiagnosed]]></category>

		<guid isPermaLink="false">http://globalgenes.org/?p=29464</guid>
		<description><![CDATA[For most of us, when we go to the doctor with symptoms, we are diagnosed and treated.  Imagine going to the doctor and being told there were no answers as to why the symptoms were occurring.  Then imagine, this is your child and all the [...]]]></description>
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		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>National Eosinophil Awareness Week, May 19-25</title>
		<link>http://globalgenes.org/national-eosinophil-awareness-week-may-19-25/</link>
		<comments>http://globalgenes.org/national-eosinophil-awareness-week-may-19-25/#comments</comments>
		<pubDate>Tue, 21 May 2013 15:20:01 +0000</pubDate>
		<dc:creator>Guest Blogger</dc:creator>
				<category><![CDATA[Advocacy Events]]></category>
		<category><![CDATA[Guest Bloggers]]></category>
		<category><![CDATA[Eosinophil Asoiciated Dieseases]]></category>
		<category><![CDATA[Eosinophilic Esophagitis]]></category>
		<category><![CDATA[_Advocacy]]></category>

		<guid isPermaLink="false">http://globalgenes.org/?p=29435</guid>
		<description><![CDATA[This week marks the 6th Annual National Eosinophil Awareness Week! This special week, honored each year during the third full week of May, was designated to create awareness of and educate others about eosinophil associated diseases (EADs), an emerging healthcare problem worldwide for which there [...]]]></description>
		<wfw:commentRss>http://globalgenes.org/national-eosinophil-awareness-week-may-19-25/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>A Little Girl With Giant Axons, a Deranged Cytoskeleton and Someday Gene Therapy</title>
		<link>http://globalgenes.org/a-little-girl-with-giant-axons-a-deranged-cytoskeleton-and-someday-gene-therapy/</link>
		<comments>http://globalgenes.org/a-little-girl-with-giant-axons-a-deranged-cytoskeleton-and-someday-gene-therapy/#comments</comments>
		<pubDate>Tue, 21 May 2013 13:58:42 +0000</pubDate>
		<dc:creator>GGP Team</dc:creator>
				<category><![CDATA[Foundation Partners]]></category>
		<category><![CDATA[Patient Stories]]></category>
		<category><![CDATA[Research]]></category>
		<category><![CDATA[Giant Axonal Neuropathy]]></category>
		<category><![CDATA[Hannah's Hope Fund]]></category>
		<category><![CDATA[patient stories]]></category>

		<guid isPermaLink="false">http://globalgenes.org/?p=29400</guid>
		<description><![CDATA[By Ricki Lewis, PhD “When you hear hoof beats, think horses, not zebras.” So goes the mantra of first-year medical students. If a common disease is a horse and a rare disease a zebra, then giant axonal neuropathy (GAN), with only 50 or so recognized cases [...]]]></description>
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		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Choosing the Right Treatment Option Can Leave Parents Feeling Like They&#8217;re &#8220;Playing God&#8221;</title>
		<link>http://globalgenes.org/choosing-the-right-treatment-option-can-leave-parents-feeling-like-theyre-playing-god/</link>
		<comments>http://globalgenes.org/choosing-the-right-treatment-option-can-leave-parents-feeling-like-theyre-playing-god/#comments</comments>
		<pubDate>Mon, 20 May 2013 17:51:10 +0000</pubDate>
		<dc:creator>Guest Blogger</dc:creator>
				<category><![CDATA[Education]]></category>
		<category><![CDATA[Guest Bloggers]]></category>
		<category><![CDATA[RARE Living]]></category>
		<category><![CDATA[lisa moreno-dickinson]]></category>
		<category><![CDATA[parent advocate]]></category>
		<category><![CDATA[rare disease treatments]]></category>
		<category><![CDATA[stopcaidnow]]></category>

		<guid isPermaLink="false">http://globalgenes.org/?p=29363</guid>
		<description><![CDATA[Any parent who has ever had a child in the hospital can relate. We’ve all been faced with the dilemma of which treatment we should support and which we should question. When we have more than one option to treat our child’s illness, we’re grateful—but [...]]]></description>
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		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Chronically Employed: How Rare Works&#8211;What&#8217;s Your Story?</title>
		<link>http://globalgenes.org/chronically-employed-how-rare-works/</link>
		<comments>http://globalgenes.org/chronically-employed-how-rare-works/#comments</comments>
		<pubDate>Mon, 20 May 2013 16:23:27 +0000</pubDate>
		<dc:creator>Ilana Jacqueline</dc:creator>
				<category><![CDATA[Guest Bloggers]]></category>
		<category><![CDATA[Money and Finance]]></category>
		<category><![CDATA[Patient Stories]]></category>
		<category><![CDATA[Patient Tools]]></category>
		<category><![CDATA[chronically employed]]></category>
		<category><![CDATA[financial stress]]></category>
		<category><![CDATA[Ilana Jacqueline]]></category>
		<category><![CDATA[patient stories]]></category>

		<guid isPermaLink="false">http://globalgenes.org/?p=29393</guid>
		<description><![CDATA[I’m not going to lie. The moment I landed my second rare disease diagnosis, I basically threw my hands up in the air and said, “Alright—I’m screwed.” Career-wise, there was no way I was coming back from this. I mean who hires a girl who [...]]]></description>
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		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Twins’ Rare, Unnamed Illness Causes Blood Vessels to Shred</title>
		<link>http://globalgenes.org/twins-rare-unnamed-illness-causes-blood-vessels-to-shred/</link>
		<comments>http://globalgenes.org/twins-rare-unnamed-illness-causes-blood-vessels-to-shred/#comments</comments>
		<pubDate>Mon, 20 May 2013 03:37:14 +0000</pubDate>
		<dc:creator>GGP Team</dc:creator>
				<category><![CDATA[Fundraising]]></category>
		<category><![CDATA[Patient Stories]]></category>
		<category><![CDATA[patient stories]]></category>
		<category><![CDATA[Rare Disease]]></category>
		<category><![CDATA[Undiagnosed]]></category>

		<guid isPermaLink="false">http://globalgenes.org/?p=29396</guid>
		<description><![CDATA[Twin brothers Forrest and Daniel Thiess had always wanted to serve in the U.S. military, but because of a rare illness, they can’t, WKRC reported. Both men, who live in Mason, Ohio, enlisted at the age of 17 – Forrest as a Marine, Daniel as [...]]]></description>
		<wfw:commentRss>http://globalgenes.org/twins-rare-unnamed-illness-causes-blood-vessels-to-shred/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Rare Diseases Obscured by Shadows of &#8216;Popular&#8217; Ills: Op-Ed</title>
		<link>http://globalgenes.org/rare-diseases-obscured-by-shadows-of-popular-ills-op-ed/</link>
		<comments>http://globalgenes.org/rare-diseases-obscured-by-shadows-of-popular-ills-op-ed/#comments</comments>
		<pubDate>Sun, 19 May 2013 13:42:19 +0000</pubDate>
		<dc:creator>GGP Team</dc:creator>
				<category><![CDATA[In the Media]]></category>
		<category><![CDATA[Patient Advocates]]></category>
		<category><![CDATA[Laurie Edwards]]></category>
		<category><![CDATA[op-ed]]></category>
		<category><![CDATA[Rare Disease]]></category>

		<guid isPermaLink="false">http://globalgenes.org/?p=29398</guid>
		<description><![CDATA[Laurie Edwards, lecturer in health and science writing at Northeastern University and author of In the Kingdom of the Sick: A Social History of Chronic Illness in America, contributed this article to LiveScience&#8217;s Expert Voices: Op-Ed &#38; Insights. After a lifetime of infections, hospitalizations and surgeries, a set of lab [...]]]></description>
		<wfw:commentRss>http://globalgenes.org/rare-diseases-obscured-by-shadows-of-popular-ills-op-ed/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Nimbus Discovery, Shire to Co-Develop Oral Rare Disease Drugs</title>
		<link>http://globalgenes.org/nimbus-discovery-shire-to-co-develop-oral-rare-disease-drugs/</link>
		<comments>http://globalgenes.org/nimbus-discovery-shire-to-co-develop-oral-rare-disease-drugs/#comments</comments>
		<pubDate>Sat, 18 May 2013 18:36:32 +0000</pubDate>
		<dc:creator>GGP Team</dc:creator>
				<category><![CDATA[Money and Finance]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Research]]></category>
		<category><![CDATA[Supporters]]></category>
		<category><![CDATA[BioMarin]]></category>
		<category><![CDATA[lysosomal storage disorders]]></category>
		<category><![CDATA[Nimbus Discovery]]></category>
		<category><![CDATA[shire]]></category>

		<guid isPermaLink="false">http://globalgenes.org/?p=29385</guid>
		<description><![CDATA[Nimbus Discovery splashed onto the scene in 2011 with a big-name investor group that included Bill Gates and a plan to discover drugs with the help of computer software. On Tuesday, that idea turned into a potentially big partnership with Shire  to help conquer currently untouchable rare [...]]]></description>
		<wfw:commentRss>http://globalgenes.org/nimbus-discovery-shire-to-co-develop-oral-rare-disease-drugs/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Lysogene Recieves US Orphan Designation for its Lead Intracerebral Gene Therapy Product SAF-301</title>
		<link>http://globalgenes.org/lysogene-recieves-us-orphan-designation-for-its-lead-intracerebral-gene-therapy-product-saf-301/</link>
		<comments>http://globalgenes.org/lysogene-recieves-us-orphan-designation-for-its-lead-intracerebral-gene-therapy-product-saf-301/#comments</comments>
		<pubDate>Sat, 18 May 2013 16:21:10 +0000</pubDate>
		<dc:creator>GGP Team</dc:creator>
				<category><![CDATA[Education]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Research]]></category>
		<category><![CDATA[LYSOGENE]]></category>
		<category><![CDATA[orphan diseases]]></category>
		<category><![CDATA[Sanfilippo Syndrome Type A]]></category>

		<guid isPermaLink="false">http://globalgenes.org/?p=29346</guid>
		<description><![CDATA[LYSOGENE announced today that the U.S. Food and Drug Administration (FDA) has granted orphan drug designation to its lead gene therapy product SAF-301 for the treatment of Sanfilippo type A syndrome (also named mucopolysaccharidosis type IIIA), a rare, genetic and life-threatening disease affecting children (http://www.accessdata.fda.gov). [...]]]></description>
		<wfw:commentRss>http://globalgenes.org/lysogene-recieves-us-orphan-designation-for-its-lead-intracerebral-gene-therapy-product-saf-301/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
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