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 >
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 >
I represented NORD at the White House this morning at an event where President Obama announced the launch of a “Brain Initiative” to help researchers find new ways to treat and cure brain disorders. The initiative includes: read more >
If you’ve never seen or heard NIH Director Francis Collins talking about drug development — and specifically the development of new drugs for rare disorders — just click here to see his TED presentation recorded last year but just posted to the TED.com web site in the past couple of days.