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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…)

February 3, 2014

TOPIC: Featured News, Patients & Members, Advocacy

Building on Policy Momentum

Posted by Paul Melmeyer

The rare disease community has seen several policy wins in the past few months, some of which may have gone unnoticed. First, in November, Congress passed the National Pediatric Research Network Act as part of the PREEMIE Reauthorization Act. President Obama signed the measure into law on November 27th. (more…)Read More