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


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


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


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


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


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?


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