Understanding of cystic fibrosis (CF) has, thankfully, come a long way from its earliest descriptions of children being “bewitched” or “hexed” because their sweat tasted of salt. And the life-expectancy of kids…
When Hagan's mom tells the 12-month-old Irish boy that he's one in a million, she isn't kidding--and it's not exactly a compliment, either. Those odds refer to the fact that…
"I wish people would just take five minutes to look up Ehlers-Danlos syndrome to raise awareness." These are the words of 15-year-old Mya Lilly Hurst, an Australian girl who suffers from…
If you or your loved one is living with a rare chronic disease, you’ve probably gone through the various stages of grief: denial, anger, depression, bargaining, and hopefully acceptance. Depending…
If you or your loved one is living with homozygous familial hypercholesterolemia (HoFH), you’re going to be thrilled with this news--and you deserve it, too! The Patient Advocate Foundation (PAF) just announced on November 2nd,…
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