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 […]
A Call for Rare Facts Unity & Consistency Read More »
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
Over 7,000 Rare Diseases Read More »
1 person in every 10 people has a Rare Disease. 30 million Americans … 30 million Europeans … 350 million around the globe … all with Rare Disease. Pause for a moment and think about your family and those that live around you … many cancers and most childhood diseases are Rare Diseases. On
1 in 10 Have a Rare Disease Read More »
