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Patient Stories

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

The Will to Live and the Strength for a Cure

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles could not function… Read More