Subscribe to
this category

Patient Stories

A total of 537 posts are filed under Patient Stories
British Woman Diagnosed with Ischemic Oesophagus, First Mistaken as a Heart Attack
A widow has become the first Briton ever to be diagnosed with an ultra-rare disease after she regurgitated seven pints of vomit that looked… Continue Reading
Baby with Dextro-Transposition Finds Life-Long Success After Surgery
by  Natalie McGee-Lester I was born with dextro-transposition of the great arteries in Houston, Texas in 1975. During that time, d-TGA and… Continue Reading
So Much More Than a Migraine: Idiopathic Intracranial Hypertension
by Amanda Ames Everyone in my family wears glasses. I remember being in first grade and struggling to see the chalkboard and being taken to… Continue Reading
My Wife Had Ehlers Danlos Syndrome and She Never Knew
My wife died in 2008. It was the same year my daughter was diagnosed with Ehlers Danlos Syndrome (EDS). We have dedicated a new program in… Continue Reading
Kyle Bryant Continues Athletic Pursuits Long After Diagnosis of Friedreich’s Ataxia
SOURCE — Kyle Bryant was a kid who wanted the ball. He wanted in on the game and always wanted a chance to help his team win. Growing up… Continue Reading
Living with LEMS
By Dr. Anne Murray I was diagnosed with LEMS or Lambert Eaton Myasthenic Syndrome in May 2011. I started to have symptoms after I developed… Continue Reading
Hayley Fights Niemann Pick Type C Using Compassionate Use Program and Cyclodextrin
Hayley was diagnosed with Niemann Pick Type C (NPC) in October of 2011. However, she had been living with the symptoms since she was six-… Continue Reading

Follow us on Twitter

Upcoming Events

Sep 14

RARE Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

RARE Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

RARE Patient Advocacy Summit

September 15 @ 8:00 am - 4:30 pm
Sep 15

RARE Champion of Hope Awards

September 15 @ 5:00 pm - 9:30 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

RARE Day of Beauty

September 16 @ 12:00 pm - 5:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm