Happy Memorial Day Weekend Patient Worthians! This week we have an inspiring interview with the CEO and Founder of the Hereditary Neuropathy Foundation. We also have a motivating story on a cheerleader battling Friedreich's…
A little pain usually is a good thing. It's our alarm system. It's our body's way of saying, "Hey, that's hot... Get away before it hurts you!" However, when the…
First, there was the saltine cracker challenge, which allegedly has its origins at the University of Tennessee with Peyton Manning making a bet. Then came the Sprite and banana challenge…
I know, we’ve all heard it a million times before. A good night’s sleep is essential for optimal health. However, as much as we love sleep, it’s easy to get…
I’m a big fan of questions. All my life, I’ve asked questions and looked for the answers. Sometimes I’ve found them, and sometimes not. What I now realize, after many…
Guillain-Barre Syndrome is a rare disorder that attacks the body’s nervous system. For anyone who has gotten Guillain-Barre Syndrome, the symptoms begin swiftly. It causes paralysis and symptoms typically begin…
Want some more news, events and announcements on SCID? We got 'em! [one_half] [/one_half] [one_half_last] The Expense of Scientific Progress: The Price of Gene Therapy for SCID The…
Rare Disease patients tend to be tremendously aware of every aspect of our lives; our under-treated diseases, our lack of social support and our own coping mechanisms. We need more…
Here’s some important information that everyone considering having children should know because they could potentially pass primary carnitine deficiency (PCD) on to their children. PCD, also known as carnitine transport…
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