TOPIC: Patients & Members
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
TOPIC: Featured News, Patients & Members, Advocacy
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
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…)
