Former Jersey Boys star Jeff Leibow, organized his first Neurofibromatosis Hope benefit concert in Las Vegas in 2011. His hope was to make it an annual event that would go…
Puberty, development, and menopause - most parents have found that explaining these concepts to kids, though entirely natural and unavoidable, comes with a certain degree of discomfort. In girls in…
The Alpha-1 Foundation has a website dedicated to Alpha-1 patients and caregivers. It offers a wealth of information and resources about about the disease. Alpha-1 Antitrypsin Deficiency (Alpha-1) is a…
If you or someone you love have Friedreich's Ataxia, you know how badly we need an adequate treatment. Friedreich's Ataxia (FA) is a rare disorder, which results in neurological and…
Nothing puts "fun" in a fundraiser than holding that event at Walt Disney World. For the past 25 years, Disney has hosted an annual marathon to help support hundreds of…
Severe diarrhea. Daily abdominal pain. Extremely high triglycerides. Chronic pancreatitis. Joint pain. Incredibly uncomfortable conditions for anyone. Now imagine you’ve experienced this pain your entire life without knowing what was…
A new film coming out this month will change the way you think about Apert Syndrome and similar disease. Keep reading to learn more about the film, or follow the…
Abi Galatia suffers from stage three osteosarcoma, a very rare and very deadly form of bone cancer. The weird part is, she dreamed that she would get the disease for…
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