NFED

As I've mentioned before, Brennyn has a very rare syndrome called ADULT (Acro-dermato-ungual-lacrimal-tooth syndrome). This is a form of Ectodermal Dysplasia.
I feel very fortunate to have found this group on the internet, the National Foundation for Ectodermal Dysplasia. It has been a treasure trove of information for someone who feels lost in a diagnosis.

Every year this organization hosts a weekend conference in different states where medical professionals, researchers, and many families affected by ectodermal dyplasias attend. There are workshops, talent shows, etc.
However, the most important part of the conference, to me, is that Brennyn would be able to play with children who also have ectodermal dysplasia.
Not to mention that I would be able to speak with other parents who have children with ED. Maybe I could even find someone who has ADULT syndrome, you never know.

The only down side is that the conference is in Florida this year, and I just don't think we'd be able to fit this in our budget. If I can find some way to swing this, I will. Perhaps I need to start by getting Brennyn a passport (yes, we have been a little lax on that, she's been a Canadian citizen for over 2 years).

EDIT: Wow, who knew flights to Florida were so expensive in July. It's not looking like we will be able to attend the conference this year. Unless I win the lottery somehow!