TOPIC: Patients & Members
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
TOPIC: Featured News, Patients & Members, Industry
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…)
TOPIC: Featured News
NORD was one of four recipients of the first-ever “Patient Advocate Awards” of BioNJ, which represents more than 300 life sciences companies in New Jersey. (more…)
TOPIC: Featured News, Patients & Members, Advocacy
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…)
