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Patient Stories

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

The Fight for a Cure for Duchenne

When Robert and Theresa Capolongo were preparing to be parents, many words were thrown around by their friends and family about the joys of having children. “Fulfilling.” “Life-changing.” “Beautiful.” These were, of course, balanced… Read More

Zan’s Journey: Diagnosed with SMS

When a psychiatrist diagnosed Robyn Fell’s toddler on the Autism spectrum, she was in shock.   “It’s not that I was in denial,” she explained, “my son, Zan, did have many unusual behaviors.”   A personality… Read More