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Patient Stories


From Mother to Daughter

“Although this horrible rare disease has taken a lot of time away from normal life, my family and I are blessed for every breath, every smile, and every rainy day! We choose… Read More

rare disease omphalocele

Giving Spotlight: Elizabeth and Chris Honor Son, Obie, with Donations to NORD, a Favorite Charity

“We are happy to be able to support NORD, and both grateful and humbled that so many of our family and friends have donated in Obie’s name to help others.”

A rainbow baby… Read More

Jill Ziegler, patient

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

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

NORD-Making Sense of NOH-Homepage

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