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Patient Stories

Jill Zeigler’s Story: Life with aHUS

“I am married and have a 9-year-old daughter. They were my motivation to keep fighting and get well.”

At age 28, sudden kidney failure changed Jill Zeigler’s life. After weeks spent in and… Read More

Rare Disease Day 2016 Theme and Slogan Announced!

Rare Disease DayTheme: Patient Voice
Slogan: Join us in making the voice of rare diseases heard

It’s here! As the official sponsor and host of… Read More

Garrett Mann

Giving Spotlight: Paula Mann Honors Son, Garrett, with Donation to NORD

 “I really appreciate all that NORD does for those living and managing their lives with rare disorders.” -Paula Mann

Paula Mann is a mother of a boy, Garrett, born in 2008 with Mitochondrial… Read More

New Video from NORD Promotes Awareness of Rare Movement Disorder Neurogenic Orthostatic Hypotension

A new video released today by the National Organization for Rare Disorders (NORD) fills a gap in health care by educating patients and doctors about a rare medical condition known as Neurogenic Orthostatic Hypotension (nOH),… Read More

Guest Blog: A Parent Advocate & Author Discusses Courage

By David Cry, Guest Blogger

David CryCourage. Strength in the face of pain or grief. A tenet I have experienced on many occasions as the lead of… Read More