(HealthNewsDigest.com) – Washington DC, Oct. 23, 2013—-When the National Organization for Rare Disorders asked its social media followers how long they had waited for an accurate diagnosis, the response went beyond even what NORD anticipated.
Within the first few hours, NORD got 200 replies, and 20% of the respondents said they had waited 10 years or longer for an accurate diagnosis.
Now, NORD has posted a blog on this topic, with quotes from a representative sampling of responses, that concludes:
“During this year marking the 30th anniversary of NORD and the Orphan Drug Act, we have been celebrating progress to date in drawing attention to the need for treatments for all patients with rare diseases. But it’s also clear that we now need to focus on the diagnosis challenge.”
Read the NORD blog on this topic.
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