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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

March 24, 2014

TOPIC: Advocacy, Featured News

Making Sure The Rare Disease Patient Voice is Heard on Capitol Hill

Posted by Mary Dunkle

NORD recently hosted a Capitol Hill briefing on the topic “Rare Diseases in a Changing Healthcare Landscape”. Keeping our elected officials informed and aware is a critically important, and this briefing… Read More

March 20, 2014

TOPIC: Patients & Members

Trivia Can Save Lives: How a Jeopardy Question Raised Awareness of a Rare Disease

Posted by

 

I woke up this morning in a great mood.  Something wonderful happened last night.  Let’s see, what was it?  Oh yeah, that Jeopardy question.  Ugh.  Then there was the realization that the moment was over, for good.  Done and gone.  So fleeting fame can be. Read More

March 6, 2014

TOPIC: Advocacy, Featured News, Patients & Members

NORD Calls Proposed Repeal of Orphan Drug Tax Credit “Anti-Patient and Anti-Public Health”

Posted by Mary Dunkle

More than 80 rare disease patient organizations have signed onto a letter NORD will be sending to two key Congressional committees opposing the proposed repeal of the Orphan Drug Tax Credit (ODTC).  The deadline to sign on is cob Friday, March 7.  NORD will send the letter to the House Ways and Means and Senate Finance committees. Read More

March 4, 2014

TOPIC: Patients & Members

Adventures of an Advocate: Annette De Bow’s Big Journeys

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Six months after her daughter Evan Claire was born in 2008, Annette De Bow, 48, of Davis, CA was diagnosed with polycythemia vera (PV), one of a closely related group of rare and progressive blood cancers called myeloproliferative neoplasms (MPNs).  Feeling alone and shell-shocked, she turned inward and felt a terrible sense of isolation knowing that she had a… Read More