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 >
The slogan, “Rare Disorders without Borders” conjures geographical borders—the borders between cities, states, nations, continents. Ideally, where a person is on a map should not factor into the availability of diagnostic, treatment, or support services. Yet illnesses can create borders within us that figuratively place people with rare disorders, or any disorders, in a world apart from those who are not ill. And although these borders are figurative in nature, they can function as barriers preventing full social engagement and interfering with important healthcare-related activities. read more >

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 >
What is antisense therapy? read more >
Rare Disease Day organizers from around the world made “Rare Disorders Without Borders” the slogan for 2013. I see in it a potent reminder that rare disorders exist everywhere in the world, and I see in it a challenge to ensure that geographic borders don’t bar access to research initiatives, therapeutic options, and support services. read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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