I realized when I moved pages from the old site to this one I forgot to move the page with Sami's story on it!  So I figured I'd wri...

Sacramento Baby  With Rare Skin Disorder

Today I was speaking to another EB mom on the phone who lives near me and who sadly lost her baby to EB about 14 months ago.  We were talki...

I know those aren't two words you hear in the same sentence; good and EB.  But there is some good that comes from EB.  The biggest one; ...

Due to high demand, DebRA’s room block at the Hyatt Regency has SOLD OUT . The entire hotel is also fully booked during the week of the Pati...