If you or your loved one recently received an ectodermal dysplasia diagnosis, you may have more questions than answers at first. How did this happen? Can our future children have it? Should I have other family members tested? All of your questions are valid ones and normal to have following a diagnosis. The specialist best…
What do your Family Conference fees actually pay for?
Basically, all your fees pay for is your food. We solicit sponsors, grants and use general donations to fund room rentals, speakers’ (12-15 unbelievable docs and dentists donate their time each year) and staff travel, scholarship recipients, off site activities, AV rental and childcare costs.The NFED absorbs 75% of the cost of the event. The 2012…
Hypohydrosis: How To Stay Cool When You Can’t Sweat
If you can’t sweat, how do you stay cool? Should you move to a cooler climate? Should you buy a cool vest? What cooling technique works best? We answer these questions and more in this document all about being cool.
Genetic Testing Offer
Males Affected by HED Needed for Research Project at the Family Conference!!! Dear NFED Family, In a research collaboration planned for the 2011 National Family Conference, Edimer Pharmaceutical, Inc. will be working with the NFED to characterize skin properties in male siblings affected by HED and unaffected male controls using skin assessment techniques. As part of…