World Rare Disease Day 2106

Today, February 29th, 

is 

World Rare Disease Day

It seems fitting that today the 40th and last participant has enrolled into the Clementia Phase 2 clinical trail that is investigating palovartene for the treatment of FOP.

When Hayden was diagnosed September 11, 2002, hope seemed to 
very, very far away.  However the following pretty much sums up the FOP Community.
"Alone we are rare. Together we are strong."

Nothing demonstrates this more that the determination of our families who fundraise, our board members who guide us along our mission and the researchers who are continually on a quest to discover a cure.

World Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representaiotn for individuals with rare diseases and their families. 

Hayden in Tahoe - 4th of July 2015