May. 08, 2013
TOPIC: Patients & Members, Research
Posted at May 8, 2013 9:29 pm
In my role as NORD’s research grant program administrator, I’m in the unique position to frequently speak with many researchers. Whether they are applying for one of our scientific seed grants (“RFPs”), or asking if NORD has funding to study a particular rare condition – these conversations are always positive, always punctuated with enthusiasm. read more >
Apr. 30, 2013
TOPIC: Patients & Members
Posted at April 30, 2013 4:04 pm
I originally started writing this blog days before Boston Marathon 2013, and was planning to post it after returning home. I’m glad that I hadn’t posted it beforehand, because the terrible events at the finish line have magnified my admiration all the more for a particular group of heroes – two groups of individuals who formed one amazing team. read more >
Nov. 19, 2012
TOPIC: Advocacy, Patients & Members
Posted at November 19, 2012 8:17 pm
The rare disease community has lost a tireless and utterly dedicated advocate – Jennifer C. Jaff, Esq. Jennifer was an attorney who, as a result of her own nearly 40-year battle with a chronic disease, became a leading advocate for people with chronic illnesses. read more >
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