News - Page 88 of 95 - NORD (National Organization for Rare Disorders)

May 30, 2014

TOPIC: Industry, Medical, Patients & Members

Images from the Portraits of Courage Celebration

Posted by admin

NORD’s Portraits of Courage Celebration on May 8, 2014, highlighted the many ways in which patients and caregivers display great dignity and grace in living with challenging rare diseases. Patients and families featured in the Portraits of Courage gallery providing an inspiring presence at the event.

We thank our sponsors and supporters who made it all possible, and extend congratulations… Read More

Tags: celebration, patients, Portraits of Courage

May 22, 2014

TOPIC: Advocacy

NORD Board Member Testifies Before Energy & Commerce Health Subcommittee

Posted by Mary Dunkle

Frank J. Sasinowski, representing the National Organization for Rare Disorders (NORD), was one of five individuals who testified on Tuesday before the U.S. House Energy and Commerce Health Subcommittee on advancing the development of treatments for Americans with unmet medical needs. (more…)

Tags: 21st Century Cures, Energy and Commerce Subcommittee, Frank Sasinowski, Mary Dunkle, NORD Board, PCAST, Rep. DeGette, Rep. Upton

May 14, 2014

TOPIC: Patients & Members, Research

VHL Alliance and NORD Launch New International Databank

Posted by Mary Dunkle

To Support Research and Gain a Better Understanding of VHL and other Forms of Cancer, Patients and Medical Experts Around the World will Share Critical Information in Search of a Cure! (more…)

Tags: Cancer, Cancer in our Genes Patient Databank, Mary Dunkle, natural history, NORD, research, tumors, VHL Alliance, von Hippel-Lindau

April 28, 2014

TOPIC: Featured News, Patients & Members

Are Civility and Mature Behavior Really Too Much to Expect?

Posted by admin

Today, along with many others, I was horrified to learn that celebrities, including Shaquille O’Neal, were mocking a man living with ectodermal dysplasia on their social media pages. Read the story. (more…)

Tags: bullying, Ectodermal dysplasia, Lizzie Valasquez, Shaquille O'Neal, Tai Spargo, TEDx

April 21, 2014

TOPIC: Medical

Engineering Treatments for Rare Disorders

Posted by Marsha Lanes

3-D printing is an exciting technology that has shown great promise in the treatment of several rare disorders. Bioprinting is a form of 3-D printing in which cells are printed or deposited on a surface layer by layer in order to produce a full organ. Lab-built organs have been shown to function well in patients, and engineered airways, bladders,… Read More

Tags: 3-D printing, bioengineering, bioprinting, Marsha Lanes, Mayer-Rokitansky-Kuster-Hauser syndrome, NCATS, New England Journal of Medicine, NIH, tracheobronchomalacia

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May 30, 2014

Images from the Portraits of Courage Celebration

Posted by admin

May 22, 2014

NORD Board Member Testifies Before Energy & Commerce Health Subcommittee

Posted by Mary Dunkle

May 14, 2014

VHL Alliance and NORD Launch New International Databank

Posted by Mary Dunkle

April 28, 2014

Are Civility and Mature Behavior Really Too Much to Expect?

Posted by admin

April 21, 2014

Engineering Treatments for Rare Disorders

Posted by Marsha Lanes

Topics

Alone we are rare. Together we are strong.®