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March 20, 2014

TOPIC: Patients & Members

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

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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: Featured News, Patients & Members, Advocacy

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

February 28, 2014

TOPIC: Featured News, Patients & Members, Industry

FDA Creates New Web-Based Educational Tool About the Agency

Posted by Mary Dunkle

The Food and Drug Administration’s Office of Orphan Products Development (OOPD), in collaboration with the FDA Center for Drug Evaluation and Research (CDER), has launched a web-based educational tool for rare disease patients, advocacy groups, researchers and industry on various FDA-related topics. (more…)