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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 Christina Jensen
Lori Sames

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 Christina Jensen
Yusuf Patel

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, Sticky Posts for Advocate, Sticky Posts for Clinicians and Researchers, Sticky Posts for Homepage, Sticky Posts for Industry, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families

2015 Rare Disease and Orphan Products Breakthrough Summit

Posted by admin

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 6, 2015

TOPIC: Uncategorized

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

Posted by Christina Jensen
Glenn & Cara O'Neill

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