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May 13, 2015

TOPIC: Featured News, Medical, Patients & Members, Research

2015 Rare Disease and Orphan Products Breakthrough Summit

Posted by Lisa Phelps

Save The Date for NORD’s Annual Rare Diseases and Orphan Products Breakthrough Summit – October 21-22, 2015 at the Crystal City Marriott in Arlington, VA.

This is the largest and most meaningful multi-stakeholder event of its kind – Historically featuring over 20 speakers from the FDA, participation from over 80 patient organizations and the Pharma/Biotech industry’s foremost experts in orphan product… Read More

May 9, 2015

TOPIC: Uncategorized

NORD Volunteer Sheds Light on CdLS for CdLS Awareness Day

Posted by Christina Jensen

Today is CdLS Awareness Day. Cornelia de Lange Syndrome (CdLS) is a genetic disorder present from birth, but not always diagnosed at birth. It causes a range of physical, cognitive and medical challenges and affects both genders equally (cdlsusa.org). Today’s awareness day for CdLS is to shed a light on the often misdiagnosed and unheard of syndrome.

[caption id=”attachment_20845″ align=”aligncenter”… Read More

May 6, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honorees, Glenn and Cara O’Neill

Posted by Jennifer Huron

In a race against time, Glenn and Cara O’Neill have quarantined their family for nearly one year to try and save their daughter, Eliza.

Eliza, 5, has Sanfilippo Syndrome, a rare degenerative disease characterized by the body’s inability to break down complex carbohydrates, resulting in a build-up of cellular waste in the brain and central nervous system that causes neurological… Read More

May 5, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree, Savannah Hollis

Posted by Jennifer Huron

Savannah Hollis, a healthy three-sport athlete who had just turned 21, was one week into her senior year at the University of Louisiana at Lafayette when a sudden internal bleeding episode nearly killed her and left her severely paralyzed on her right side.

 

Her symptoms came on with dizziness, which she tried to sleep off with a nap, followed by… Read More

May 2, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree, Sophia Hanson

Posted by Jennifer Huron

At the age of 15, Sophia Hanson was attending boarding school in Chicago at Lake Forest Academy.  She loved running for the cross-country team, where she would run up to six miles a day and compete on a regular basis, pushing her body to extraordinary limits.

Now at 18 years old, Sophia is preparing for New York University in the… Read More