En un estudio reciente publicado por Prime Therapeutics, la compañía informó que el costo anual del tratamiento de un paciente con AEH es más de $ 300.000. Queríamos ilustrar las…
Like all genetic disorders, there aren’t many silver linings to having cystic fibrosis. The best we can say is that life expectancy for people with CF has improved thanks to…
Happy Friday Patient Worthians! We hope your Mother's Day was as awesome as ours. This week we have some awesome posts from our rare moms (#RareMom), those who fight their own…
Do you have hives (or a rash) that will not go away? And maybe inflammation of your joints, recurrent fevers, and perhaps enlarged lymph nodes? If you answered yes, you may…
For years, patient advocates and insurance companies have been outraged and fighting about a Lyme disease bill in Massachusetts that is controversial. The proposed bill, if passed, would provide long-term…
1. It’s Genetic A hereditary condition, familial hypercholesterolemia (FH) affects roughly 1 in 500 people around the world, according to the National Institutes of Health. Because the disorder is present…
Amber Blair, a brave 13-year-old girl from Chowchilla, California, was born with common variable immune deficiency (CVID), but she wasn’t properly diagnosed until years later, according to Chowchilla News. She…
I had a sneaking suspicion that I was sick before any doctors diagnosed me with chronic, late-stage Lyme disease. The following playlist pretty much spells out my journey from feeling…
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