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Patient Stories

Rare Reflections: Jacob’s Story

I was diagnosed with toxic acute progressive leukoencephalopathy, a rare brain disease that took me from a high functioning and able-bodied individual to locked in syndrome, in six months. This story began… Read More

Head of the Herd: Michele Sloan, Foundation to Fight H-abc

Head of the Herd: Michele Sloan, Foundation to Fight H-abc

At the head of the herd is… Michele Sloan, Director, Foundation to Fight H-abc

Michele most frequently checks her…Read More

Head of the Herd: Akiva Zablocki, The Hyper IgM Foundation

At the head of the herd is… Akiva Zablocki, President, The Hyper IgM Foundation

Akiva most frequently checks his…  https://www.facebook.com/Akiva 

Akiva advocates for… Read More

Savannah’s Story in honor of Rare Disease Day

I suffer from neuromyelitis optica, or NMO disease (sister of MS, also known as Devic syndrome) and chronic pain. I experienced my first attack… Read More

Bridget’s Story in honor of Rare Disease Day

I was diagnosed with afibrinogenemia when I was just one day old. The day I was born my heel sticks would not stop bleeding,… Read More