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A Call for Rare Facts Unity & Consistency

It’s Our Opinion … I presented this poster at the NIH’s Rare Disease Day event earlier this week (2/27/17).  In short, to maximize impact and credibility, we are asking all organizations – government, advocacy, industry/pharma, academia, etc. to be consistent with their public sharing of Rare Disease facts. I realize that sometimes we must be very scientific about […]

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Over 7,000 Rare Diseases

There are over 7,000 Rare Diseases. While each of the 7,000 diseases may be rare, when you add them all up they affect 30 million Americans … 30 million Europeans … 350 million around the globe … 1 of every 10 people have a Rare Disease. Most of the muscular dystrophies are rare … cystic fibrosis is rare … many cancers are

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