HAYDEN'S HOPE

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to ...

John and I are so excited about this. Hayden is enrolling in the drug trial at UCSF in 2 weeks.  Fingers crossed.

In the beginning of December, the Int'l FOP Association hosted a family gathering in San Francisco. The IFOPA started hosting family gat...

Please support me on my Dipsea run honoring Hayden and FOP research by donating to the International FOP Association.   Click here  to make ...

NORD Announces Honorees for the 2017 Rare Impact Awards  Posted by Jennifer Huron Washington, D.C., March 15, 2017 —The National Organ...

rare /re(ə)r/   Adjective 1.) marked by unusual quality, merit or appeal, distinctive 2.) seldom occuring or found uncommonly Typic...

The IFOPA hosted the second Drug Development Forum Oct. 24 to 25 in Boston, Mass. The very popular Forum brings together both academic and ...