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Patient Stories

A Newborn Screening Reflection: Sarah’s Story

September is Newborn Screening Awareness Month, and I’d like to share our family’s experience with it, and why we think every parent should know more about this incredible test, that looks for dozens of… Read More

#RareCancerDay is September 30! NORD will share facts, information and patient stories throughout the month.

Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition, which is composed… Read More

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