rare diseases
I Spent 40 Years Looking For Answers to My Pain. I Didn’t Know I Had a Rare Genetic Disorder.
Through genetic testing, I learned I had primary hyperoxaluria, or PH, a rare condition that caused my kidneys and liver to fail
Pasé 40 años buscando una explicación para mi dolor. No sabía que tenía un trastorno genético infrecuente.
Mediante pruebas genéticas, me enteré que tenía hiperoxaluria primaria o HP, un trastorno infrecuente que me causó insuficiencia renal
Myasthenia Gravis Won’t Stop Me From Living My Best Life
Living with a rare disease has only made me work harder to do all the things people said I couldn’t do
What Is Primary Hyperoxaluria?
Primary hyperoxaluria is a group of rare genetic disorders — and frequent kidney stones may be the first sign. Learn more about PH.
Living with Primary Hyperoxaluria
There’s no cure for primary hyperoxaluria, but early treatment can help slow down the progression to kidney disease
My Son Won the Basketball Championship, then Passed 15 Kidney Stones
I teach math, and my son’s symptoms didn’t add up to anything I recognized. It was primary hyperoxaluria, an ultra-rare liver disease.
Navigating a Rare Disease
From diagnosis to treatment, people living with rare diseases face many obstacles. But recent advancements in technology and research could change that.
My Ear Infection Turned Out to Be a Rare Disease
I was treated for an ear infection — then cancer — before I was finally diagnosed with a rare disease called IgG4-RD
Having a Rare Disease Called PBC Taught Me to Speak Up
I spent years just waiting for a treatment — now, I’m advocating for one
Rare Diseases 101
Rare diseases may not be common, but together they affect 1 in 10 Americans. Here’s what you need to know.
