January 29, 2014
At the Corner of Tragedy and Opportunity
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May 31, 2013
When the Eruption is Over: One Sister Dreams of When Rare Diseases (Like Batten Disease) Have Treatments
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May 21, 2013
A Little Girl With Giant Axons, a Deranged Cytoskeleton and Someday Gene Therapy
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April 30, 2013
The Importance of Patient Advocates for Orphan Drugs
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January 18, 2013
Hannah’s Hope Fund Helps Create a Path to a Phase 1 Clinical Trial for Giant Axonal Neuropathy
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September 26, 2012
Sheyenne Suffers From Giant Axanol Neuropathy (GAN) and is Fighting For Her Life
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September 6, 2012
The Miracle of a Cure is Possible for Giant Axonal Neuropathy (GAN) Patients Like Hannah
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August 7, 2012
Giant Axonal Neuropathy (GAN) Takes Over Chrissy’s Small Body Causing Paralysis
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August 5, 2012
The Importance of Patient Initiated Research and Virtual BioTechs
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August 3, 2012
DNA Testing in Europe Confirms that Amanda Suffers From Giant Axonal Neuropathy (GAN)
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August 1, 2012
Whole Exome Sequencing Identifies Mystery Gene in 3 year old Gavin Stevens
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May 15, 2012
World Orphan Drug Congress: Harmonization
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