February 04, 2013
Rare Disease Day Media Portal


Three Rare Diseases; One NJ Community

Rare Disease Day is February 28th

You probably have never heard of Progeria, hypophosphatasia (HPP) or Fibrodysplasia Ossificans Progressiva (FOP), most people haven’t.  They are rare diseases.  To put in perspective how rare they are, you have a better chance of being struck by lightning (1 in 1,000,000) than you do of being born with Progeria (1 in 8,000,000 diagnosed).  There are currently 100 known cases of Progeria in the US. There are only 800 known cases of FOP worldwide.  And HPP is so rare that it goes undiagnosed by most pediatricians.

But one New Jersey community is no stranger to these diseases and is rallying to fight them on behalf of some of its smallest members.   Meet Cannon (7), Zoey (3) and Ian (22).  They suffer respectively from HPP, Progeria and FOP.  Diagnosed too young to even be able to pronounce them, they live every day with diseases for which there is no treatment or cure.

With Rare Disease Day (Feb 28th) coming up, we invite you to come to Mt. Lakes, NJ to meet with Cannon, Zoey and Ian, and their families to see how they are involving their communities to raise funds, educate and advocate to change the future of rare diseases.  The key to a cure for other common conditions such as cardiovascular disease, osteoporosis and aging may be unlocked through the research done on rare diseases such as these.