Krysandra Bellino wrote -IM TRYING TO RAISE MONEY Every year there is a conference held by the NATIONAL FOUNDATION OF ECTODERMAL DYSPLASIAS. This is the umbrella syndrome. Focal dermal dysplasia aka goltz syndrome falls under this umbrella. My daughter was born with fdh. It has been extremely difficult trying to get doctors that know of her syndrome! I would really love to go with my daughter. At this conference they will have specialist that know and TREAT Others with this syndrome!!! The conference is in Washington D.C. this year. I want to take willow and go! I have so many questions and so many concerns that I feel would be best answered at this conference! thank you so much!