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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

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…)

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