Creative parenting. I find such inspiration when I hear about parents digging deep to adapt surroundings (or life) so their kids can deal with it better. A WBTV social media…
My name is Alan. I cross many borders as a person with a rare disease. These borders are physical, geographical and psychological. Crossing so many borders has earned me the…
I have lived with chronic pain from a neurological movement disorder called dystonia for nearly 20 years. It reminds me of the bully who picks on kids in the schoolyard…
Ovarian cancer diagnosis is extremely rare in women under the age of 20, yet Kronenwetter teenager, Khiana Bradsaw, was diagnosed at the young age of 13-years-old, reports ABC 9 News…
According to a story from Newswise, a recent study shows that Merkel cell carcinoma, which historically has affected only a few thousand people per year, is becoming more prevalent, especially…
Tomorrow is Rare Disease Day! There are 7,000 rare diseases and disorders that affect about 30 million Americans. Three hundred million worldwide are affected by rare diseases and 95% of those…
Meisyn Ellison, a 13-year-old in Utah, adopted from China, battles the debilitating effects of her rare disease and now seeks to find her biological parents in hopes to give doctors…
Jahkee Johnson, a 16-year-old from Cedar Grove High School, is exceptional and accomplished for many reasons, beyond the fact that he tackles challenges and goal without the help of legs,…
Pompe disease affects roughly one person in every 40,000. One form of the disease specifically develops within the first months of birth, or early on in childhood. Now, the first…
As an official Friend of Rare Disease Week, we are highlighting some of our heroes and rare disease warriors' stories. Below was submitted by the ADNP Kids Research Foundation and…
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