The Neuropathy Association to Host a “Rare Neuropathies: Getting Diagnosed, Getting Help” Facebook Chat

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In the U.S., the Rare Disease Act of 2002 defines a rare (or orphan) disease as any disease or condition affecting less than 200,000 people (or about 1 in 1,500). Of the over 100+ different types of neuropathies impacting millions in the U.S. alone, there are several neuropathies that are considered rare diseases including hereditary neuropathies like Charcot-Marie Tooth (CMT), familial … [more here...]

Trends in Rare Diseases. Why the “Ice Bucket Challenge” is a Cold Dash of Temporary Relief

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Out of 14 different titles, Elsevier’s Cell Press has no Trends in Rare Diseases. To be fair, there are some rare diseases mentioned in some of the … [more here...]

Vertex’s 2-Drug Cystic Fibrosis Pill Shows Promise

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Vertex Pharmaceuticals said on Tuesday that a combination of two of its drugs had successfully treated cystic fibrosis in closely watched clinical … [more here...]

I Gave My Stem Cells To Save a Life From Cancer And Now I Have Contracted a Deadly Disease With No Cure

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My name is Hannah Heinzig, and I am 24 years old recently diagnosed with Pemphigus Vulgaris. This is how everyone starts out there story, so I will … [more here...]

Patient Advocacy Summit 2014: The Must-Have Collaborations for Successful Drug Development

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Ready to hone your skills of collaboration and develop a better understanding of the drug development process? At this year’s Patient Advocacy Summit … [more here...]

Celiac to Refractory

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On January 29th, 2009, I was hit head on by a drunk driver who was driving on the wrong side of the road. Within three months I became gravely ill. … [more here...]

September is Achalasia Awareness Month: How Will You Spread Awareness?

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September is a particularly exciting month for Nancy Lazarus, founder of the Achalasia Awareness Organization. Lazarus was diagnosed in 1996 after … [more here...]