Rapp Hodgkin and Hay Wells: The Same Disorder?

Yes! Rapp Hodgkin syndrome (RHS) and Hay Wells syndrome (HWS) were initially named after the physicians who first described the disorders in the literature in 1968 and 1976, respectively.  Both pairs of physicians described an ectodermal dysplasia characterized by hair, nail, limb, and tooth abnormalities, as well by facial clefts. The only difference between the…

2011 Halloween Bash Update!

A while back, we posted the “Save the Date” information for the 11th Annual Halloween Bash, an evening to benefit the National Foundation for Ectodermal Dysplasias in New York City, NY on Thursday October 27th, 2011. Please, check out the complete invitation! Tell your friends about this great fundraising event! How about placing an ad in…

Bruno's Golf Outing 10 September 2011!

Bruno’s 16th Golf Outing in Blue Island, IL sponsored by the Swierczeski family, to raise money for the National Foundation for Ectodermal Dysplasias was a huge success.  The Swierczewski Family raised more than $11,000 with their golf outing on Saturday 10 Sept. It is all about spreading awareness, being visible & having fun doing so.  Enjoy the pictures! Thanks to everyone…