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May 21, 2015

TOPIC: Advocacy, Featured News, Press Releases

NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative

Posted by Jennifer Huron

NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and the introduction of the OPEN Act in the United States Senate.

NORD congratulates the House Energy and Commerce Committee for unanimously approving the 21st Century Cures initiative. As Chairman… Read More

May 16, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree, Lori Sames

Posted by Jennifer Huron

When Lori Sames’ daughter, Hannah, was diagnosed with Giant Axonal Neuropathy (GAN), a rare disease that results in progressive nerve death, she could find only one scientist in the world studying it.  She knew that if they could ever hope to help Hannah or another GAN patient, she needed to do something revolutionary.

After overcoming the initial grief and shock… Read More

May 14, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree, Yusuf Patel

Posted by Jennifer Huron

Yusuf Patel is a 12-year-old rare disease patient and advocate who is helping to save the lives of other children.

His journey began at 9 months old, on a flight home from India visiting grandparents.   Yusef experienced a medical crisis that caused the plane to make an emergency landing in Turkey.  The family stayed for two weeks until doctors diagnosed… Read More

May 13, 2015

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

2015 Rare Disease and Orphan Products Breakthrough Summit

Posted by Lisa Sencen

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